Jessica Gregory

@jessicakgregory | contributor
Jess is a 27 year old Australian, living with her fiancé in Belgium. She is a former music teacher and performer who is currently in full-time rehabilitation for multiple chronic illnesses. Aside from music, she enjoys books, languages, cuddly animals, vintage fashion and trash TV. Her life has changed a lot over the past few years and she is passionate about learning more about self-love and self-expression as someone who newly identifies as disabled.

Pelvic Floor Dysfunction Therapy and Sex With Ehlers-Danlos Syndrome

“And your sex life?” asked the pain psychologist in a soft tone of voice that could only be harnessed by someone who was well-versed in navigating these sensitive topics. My voice cracked almost immediately as I started to explain that sex just wasn’t possible for me anymore between the hip dislocations, extreme fatigue, and spontaneous projectile vomiting. “How long has it been?” she asked. “Almost a year,” I responded, unable to make eye contact. “Sounds like this is really hard on you,” she said with a kind smile. Something about her empathy broke me, and I started sobbing uncontrollably. After a little more talking, she honed in on the fact that my libido hadn’t evaporated, and there was something else that was actively deterring me from attempting to restore my sex life… and she was right. There was never a time in my life when sex was completely pain-free…but then again, there had never really been a time in my life where any physical activity had been pain-free. What I realized over the course of our conversation was that the moderate discomfort I used to feel had been gradually escalating over the course of the last two years to an excruciating, sharp pain that was no longer tolerable. I chose to stay in denial about this realization for a little while longer — until I went to the gynecologist and had a very painful pelvic exam. She prescribed me some different hormonal options for menstrual cramps and my premenstrual dysphoric disorder, but unsurprisingly, these didn’t do anything for the actual muscular and mechanical pain I was feeling inside. She also spoke to me about the psychological cycle of experiencing painful sex and the tendency to “clench up” in preparation for the pain, recommending that I see a pelvic floor therapist. Something about this didn’t ring true to me though. I was pretty well used to everything being painful all the time, so why had it suddenly become so intolerable? Despite feeling pretty negatively about her suggestion — maybe my judgment was being clouded by previous medical gaslighting, but it sounded like I was just going to pay for the privilege of being told to relax and stop worrying — I decided to schedule a follow up with my general practitioner to ask for the referral for pelvic floor therapy. When I arrived at the appointment, there was a young person hovering around my doctor, who was soon introduced to me as one of her medical students. “Terrific, an audience…” I thought to myself. After a few minutes of awkward stalling, I had no choice but to bite the bullet. “I have been having a problem with pain during… sex,” I whispered like I was 12 years old. The suspiciously young-looking medical student nodded at me encouragingly, and I realized that I had perhaps judged him too harshly. He managed to communicate a lot to me in that single look. He seemed to be saying, “It’s OK, and it’s normal. You can do it!” After ruling out signs of infection, my GP explained to me that painful sex was quite common in fibromyalgia patients as the genitals were simply another area with nerve endings to which the brain could send faulty pain signals. She also explained that it could be a symptom related to my Ehlers-Danlos syndrome as from a medical perspective, it was simply another area made of soft tissues. She said that while pelvic floor therapy may help me, I may also benefit from using a topical solution for a while to break the feedback loop of pain between the local nerve endings and my brain. She then proceeded to treat me to a short but delightful explanation of how to use this during foreplay — with the recommendation that I combine it with “a lot” of lube. I wondered if I would ever be able to look her in the eye again. Although the whole process had made me deeply uncomfortable up until this point, I was left with a sense of relief after the appointment (perhaps feeling that the worst was over), and a week later, I was rolling up to my first pelvic floor therapy session, calm and finally ready to tackle this symptom head-on. Fortunately, the physical therapist was excellent and made me feel at ease. After another pelvic exam, she told me that she felt my difficulties with sex were much more muscular than they were psychological and further explained the link between Ehlers-Danlos syndrome and pelvic floor dysfunction, stating that healthy collagen was vital for maintaining vaginal elasticity. She also explained that the escalation of these symptoms was probably linked to the deterioration of function in the rest of my body over the past couple of years. She also explained that holding tension in the pelvic floor area was quite common among patients with chronic pain, fatigue, or muscular conditions as we had a tendency to over-engage this area to compensate for other muscles that may not be working properly during physical activity. This came as quite a surprise to me. When I was doing rehabilitative Pilates at a younger age, I was constantly told how important it was to engage my pelvic floor and felt that this was something I always had to really focus on. However, in the weeks that followed, I realized that at some point, I had indeed crossed over into overcompensation, squeezing the life out of my poor pelvic floor muscles — especially when getting in and out of chairs and cars and when walking on uneven surfaces (looking at you, Brussels!) The pelvic floor therapist also gave me some manual exercises to do at home to help release the perineal muscle. Attempting these for the first time was a real wake-up call – my perineum was rock-hard, and I literally could not tell where my pelvic bone ended and the muscle began! In some ways, this was quite encouraging, as it made it seem like it was simply a muscle that could be retrained, like I had previously done for other areas of my body. The following week, I returned for my second appointment, which was when we really got down to business. The PT did a long manual release session on the perineum (which was painful but tolerable), and we agreed to start doing mild electrical nerve stimulation on my bladder as I had also complained of bladder pain and felt that it was contributing to my overall discomfort during sex. Sadly, I reached quite a low point after this session as I experienced intense muscular and nerve pain in the days that followed my treatment. The pain was biting and tingly, extending into my legs, butt, and abdomen. It was like the pain that had put me off of sex in the first place, only supercharged, and it made the thought of ever having any sexual contact again sickening to me. Although I had sunk back into the mindset that I was never getting better, the PT remained optimistic that this was just a temporary road bump. She said all we needed to do was continue with the same therapies at a slower pace. After my third session, I had the same pain to a lesser extent, but fortunately, this was the last time that I struggled in a significant way after treatment. I gradually became more confident in mimicking the therapist’s techniques at home, and I was able to make slow, steady progress with the perineal muscle. It took a bit longer to see progress with my bladder, but gradually, that started to improve too. The next step was to take my newfound “elasticity” for a road test…something that forced me to confront another big obstacle: my internal shame and loss of confidence. I never considered myself to be a prude or particularly body-conscious, but when your body changes due to an illness, it can be very hard not to let it change the way you see yourself, especially when so many of us experience changes in the way that others view and treat us. For me, it wasn’t just the changes in my physical appearance that I found challenging, but it was also the changes in my abilities — both inside and outside of the bedroom. I worried about whether my partner still felt attracted to me when I was pale, losing hair, and often lacking the energy to dress up and put on makeup. I worried about whether they were frustrated with me for not being able to contribute to our relationship as much as I used to. I also worried about whether or not they would be disappointed if our sex wasn’t as energetic as it used to be. Despite my best efforts to move past this, whenever I contemplated the idea of initiating sex, I found myself overcome with an intense feeling of sadness and fatigue, and I realized that I had yet to grieve the fact that this was yet another area of my life that had been changed — possibly forever — by my disability. This grieving process stopped me from giving sex another try for a quite a while after my perineum had recovered, and you know what? That’s OK. I also needed time to heal emotionally before I shared this vulnerable and intimate side of myself again. In fact, I think that waiting longer and ensuring that I was not only physically but also mentally ready largely contributed to the roaring success of my first attempt at having sex again. The sex was different, but it was different in a good way. I was surprised by how easy it felt and was delighted to learn that having a strong pelvic floor didn’t have to mean feeling like you needed a shoe horn in the bedroom! The extra time and grace that I allowed myself also meant that I was much more confident in communicating my needs, trying different positions, using props like pillows to get comfortable, and not ending up totally wrecked afterwards (Even when I was younger and healthier, having to pop my hips back into place after sex was basically the norm for me!) Although I am incredibly grateful for our ongoing sexual revolution and the fact that sex is becoming less and less taboo, something that I have realized over the past year is that experiencing pain or difficulty having sex is still looked down upon and pigeonholed as something that is only experienced by the sexually repressed. While this is sadly still a real issue for many people (and definitely not something they should have to feel ashamed of), there are a whole host of reasons as to why someone may find sex challenging. At the end of the day, sex is a physically demanding and emotionally-charged activity, and we desperately need to have open discussions about this. It’s high time that sex education addresses not only the mechanical and medical aspects of sex but also how it can be enjoyed by different types of people in a physically and emotionally safe way. I am still learning more about what my conditions mean for me in the bedroom, and the reality is that pain and fatigue do still stop me from having sex sometimes. From time to time, I also make the mistake of pushing myself too hard and have to pay for it the next day (Remember, fellow bendy babes, that just because you can do something in the bedroom doesn’t always mean you should!) But all in all, I am grateful for the improvement I have found through pelvic floor therapy. I do still need maintenance sessions, especially for my bladder, which seems to flare up whenever I have a migraine. However, the most important thing I have learned is to treat these areas just like any other part of my body — a body impacted by an illness I have no control over and that deserves love so that I can live life to the fullest.

Community Voices

Has anyone had success with the Mirena/progestin IUD ?

I have historically had problems with increased joint laxity and pain when using progesterone only contraceptives such as the mini pill or Implanon. However, I have recently been recommended the Mirena because the level of progestin is lower and so apparently it "might be better."

I am very feeling very cautious/skeptical of this suggestion due to the fact that insertion and removal aren't exactly a walk in the park, and I've heard a lot of negative stories about it. I was wondering if anyone else with EDS/HSD has actually had success with it?

Many thanks xx
#EDS #HSD #Hypermobility

5 people are talking about this

Pelvic Floor Dysfunction Therapy and Sex With Ehlers-Danlos Syndrome

“And your sex life?” asked the pain psychologist in a soft tone of voice that could only be harnessed by someone who was well-versed in navigating these sensitive topics. My voice cracked almost immediately as I started to explain that sex just wasn’t possible for me anymore between the hip dislocations, extreme fatigue, and spontaneous projectile vomiting. “How long has it been?” she asked. “Almost a year,” I responded, unable to make eye contact. “Sounds like this is really hard on you,” she said with a kind smile. Something about her empathy broke me, and I started sobbing uncontrollably. After a little more talking, she honed in on the fact that my libido hadn’t evaporated, and there was something else that was actively deterring me from attempting to restore my sex life… and she was right. There was never a time in my life when sex was completely pain-free…but then again, there had never really been a time in my life where any physical activity had been pain-free. What I realized over the course of our conversation was that the moderate discomfort I used to feel had been gradually escalating over the course of the last two years to an excruciating, sharp pain that was no longer tolerable. I chose to stay in denial about this realization for a little while longer — until I went to the gynecologist and had a very painful pelvic exam. She prescribed me some different hormonal options for menstrual cramps and my premenstrual dysphoric disorder, but unsurprisingly, these didn’t do anything for the actual muscular and mechanical pain I was feeling inside. She also spoke to me about the psychological cycle of experiencing painful sex and the tendency to “clench up” in preparation for the pain, recommending that I see a pelvic floor therapist. Something about this didn’t ring true to me though. I was pretty well used to everything being painful all the time, so why had it suddenly become so intolerable? Despite feeling pretty negatively about her suggestion — maybe my judgment was being clouded by previous medical gaslighting, but it sounded like I was just going to pay for the privilege of being told to relax and stop worrying — I decided to schedule a follow up with my general practitioner to ask for the referral for pelvic floor therapy. When I arrived at the appointment, there was a young person hovering around my doctor, who was soon introduced to me as one of her medical students. “Terrific, an audience…” I thought to myself. After a few minutes of awkward stalling, I had no choice but to bite the bullet. “I have been having a problem with pain during… sex,” I whispered like I was 12 years old. The suspiciously young-looking medical student nodded at me encouragingly, and I realized that I had perhaps judged him too harshly. He managed to communicate a lot to me in that single look. He seemed to be saying, “It’s OK, and it’s normal. You can do it!” After ruling out signs of infection, my GP explained to me that painful sex was quite common in fibromyalgia patients as the genitals were simply another area with nerve endings to which the brain could send faulty pain signals. She also explained that it could be a symptom related to my Ehlers-Danlos syndrome as from a medical perspective, it was simply another area made of soft tissues. She said that while pelvic floor therapy may help me, I may also benefit from using a topical solution for a while to break the feedback loop of pain between the local nerve endings and my brain. She then proceeded to treat me to a short but delightful explanation of how to use this during foreplay — with the recommendation that I combine it with “a lot” of lube. I wondered if I would ever be able to look her in the eye again. Although the whole process had made me deeply uncomfortable up until this point, I was left with a sense of relief after the appointment (perhaps feeling that the worst was over), and a week later, I was rolling up to my first pelvic floor therapy session, calm and finally ready to tackle this symptom head-on. Fortunately, the physical therapist was excellent and made me feel at ease. After another pelvic exam, she told me that she felt my difficulties with sex were much more muscular than they were psychological and further explained the link between Ehlers-Danlos syndrome and pelvic floor dysfunction, stating that healthy collagen was vital for maintaining vaginal elasticity. She also explained that the escalation of these symptoms was probably linked to the deterioration of function in the rest of my body over the past couple of years. She also explained that holding tension in the pelvic floor area was quite common among patients with chronic pain, fatigue, or muscular conditions as we had a tendency to over-engage this area to compensate for other muscles that may not be working properly during physical activity. This came as quite a surprise to me. When I was doing rehabilitative Pilates at a younger age, I was constantly told how important it was to engage my pelvic floor and felt that this was something I always had to really focus on. However, in the weeks that followed, I realized that at some point, I had indeed crossed over into overcompensation, squeezing the life out of my poor pelvic floor muscles — especially when getting in and out of chairs and cars and when walking on uneven surfaces (looking at you, Brussels!) The pelvic floor therapist also gave me some manual exercises to do at home to help release the perineal muscle. Attempting these for the first time was a real wake-up call – my perineum was rock-hard, and I literally could not tell where my pelvic bone ended and the muscle began! In some ways, this was quite encouraging, as it made it seem like it was simply a muscle that could be retrained, like I had previously done for other areas of my body. The following week, I returned for my second appointment, which was when we really got down to business. The PT did a long manual release session on the perineum (which was painful but tolerable), and we agreed to start doing mild electrical nerve stimulation on my bladder as I had also complained of bladder pain and felt that it was contributing to my overall discomfort during sex. Sadly, I reached quite a low point after this session as I experienced intense muscular and nerve pain in the days that followed my treatment. The pain was biting and tingly, extending into my legs, butt, and abdomen. It was like the pain that had put me off of sex in the first place, only supercharged, and it made the thought of ever having any sexual contact again sickening to me. Although I had sunk back into the mindset that I was never getting better, the PT remained optimistic that this was just a temporary road bump. She said all we needed to do was continue with the same therapies at a slower pace. After my third session, I had the same pain to a lesser extent, but fortunately, this was the last time that I struggled in a significant way after treatment. I gradually became more confident in mimicking the therapist’s techniques at home, and I was able to make slow, steady progress with the perineal muscle. It took a bit longer to see progress with my bladder, but gradually, that started to improve too. The next step was to take my newfound “elasticity” for a road test…something that forced me to confront another big obstacle: my internal shame and loss of confidence. I never considered myself to be a prude or particularly body-conscious, but when your body changes due to an illness, it can be very hard not to let it change the way you see yourself, especially when so many of us experience changes in the way that others view and treat us. For me, it wasn’t just the changes in my physical appearance that I found challenging, but it was also the changes in my abilities — both inside and outside of the bedroom. I worried about whether my partner still felt attracted to me when I was pale, losing hair, and often lacking the energy to dress up and put on makeup. I worried about whether they were frustrated with me for not being able to contribute to our relationship as much as I used to. I also worried about whether or not they would be disappointed if our sex wasn’t as energetic as it used to be. Despite my best efforts to move past this, whenever I contemplated the idea of initiating sex, I found myself overcome with an intense feeling of sadness and fatigue, and I realized that I had yet to grieve the fact that this was yet another area of my life that had been changed — possibly forever — by my disability. This grieving process stopped me from giving sex another try for a quite a while after my perineum had recovered, and you know what? That’s OK. I also needed time to heal emotionally before I shared this vulnerable and intimate side of myself again. In fact, I think that waiting longer and ensuring that I was not only physically but also mentally ready largely contributed to the roaring success of my first attempt at having sex again. The sex was different, but it was different in a good way. I was surprised by how easy it felt and was delighted to learn that having a strong pelvic floor didn’t have to mean feeling like you needed a shoe horn in the bedroom! The extra time and grace that I allowed myself also meant that I was much more confident in communicating my needs, trying different positions, using props like pillows to get comfortable, and not ending up totally wrecked afterwards (Even when I was younger and healthier, having to pop my hips back into place after sex was basically the norm for me!) Although I am incredibly grateful for our ongoing sexual revolution and the fact that sex is becoming less and less taboo, something that I have realized over the past year is that experiencing pain or difficulty having sex is still looked down upon and pigeonholed as something that is only experienced by the sexually repressed. While this is sadly still a real issue for many people (and definitely not something they should have to feel ashamed of), there are a whole host of reasons as to why someone may find sex challenging. At the end of the day, sex is a physically demanding and emotionally-charged activity, and we desperately need to have open discussions about this. It’s high time that sex education addresses not only the mechanical and medical aspects of sex but also how it can be enjoyed by different types of people in a physically and emotionally safe way. I am still learning more about what my conditions mean for me in the bedroom, and the reality is that pain and fatigue do still stop me from having sex sometimes. From time to time, I also make the mistake of pushing myself too hard and have to pay for it the next day (Remember, fellow bendy babes, that just because you can do something in the bedroom doesn’t always mean you should!) But all in all, I am grateful for the improvement I have found through pelvic floor therapy. I do still need maintenance sessions, especially for my bladder, which seems to flare up whenever I have a migraine. However, the most important thing I have learned is to treat these areas just like any other part of my body — a body impacted by an illness I have no control over and that deserves love so that I can live life to the fullest.

Community Voices

Has anyone had success with the Mirena/progestin IUD ?

I have historically had problems with increased joint laxity and pain when using progesterone only contraceptives such as the mini pill or Implanon. However, I have recently been recommended the Mirena because the level of progestin is lower and so apparently it "might be better."

I am very feeling very cautious/skeptical of this suggestion due to the fact that insertion and removal aren't exactly a walk in the park, and I've heard a lot of negative stories about it. I was wondering if anyone else with EDS/HSD has actually had success with it?

Many thanks xx
#EDS #HSD #Hypermobility

5 people are talking about this
Community Voices

Has anyone had success with the Mirena/progestin IUD ?

I have historically had problems with increased joint laxity and pain when using progesterone only contraceptives such as the mini pill or Implanon. However, I have recently been recommended the Mirena because the level of progestin is lower and so apparently it "might be better."

I am very feeling very cautious/skeptical of this suggestion due to the fact that insertion and removal aren't exactly a walk in the park, and I've heard a lot of negative stories about it. I was wondering if anyone else with EDS/HSD has actually had success with it?

Many thanks xx
#EDS #HSD #Hypermobility

5 people are talking about this

The Difference Between Being Flexibile and EDS / Hypermobility

I limp down to my regular spot by the school canteen. My friend Michelle comes bounding over to me. “You missed P.E. again today!” She exclaimed. “Everything OK?” “Yeah, I just rolled my ankle again,” I say, with a defeated sigh. “Again? Wow, you’ve been so unlucky this year!” “Not really, unfortunately.” I respond. “I’m extremely hypermobile, so I’ve basically always been this prone to injuries.” “Ooh,” said Michelle excitedly. “So did you used to be a gymnast or something?” I stare back at her with what I can only imagine was a slow blink of disbelief, genuinely having no idea how she could have come to this conclusion. “Um… no. I’ve always been hypermobile, so high impact sports have never been good for me.” “Oh,” Michelle replied, slightly disappointed, and probably just as confused as I was. Had I been properly educated about my condition growing up, I could have easily identified what went wrong with this conversation. My well-meaning friend had made the common mistake of equating mobility with flexibility. Most simply put, flexibility is the distance your muscles can stretch before contracting back into their original position. Flexibility is influenced by several factors including physical activity, age, gender, body temperature and body composition. It is also a skill that can be trained through a mixture of dynamic and static stretching, as well as a balanced approach to your overall health and fitness. Mobility, on the other hand, is the ease with which your joints can move through their range of motion. Hypermobility, by extension, is the ability of a joint to easily move through an abnormally large range of motion. For example, being able to easily roll your ankle to the point where it causes damage to the surrounding soft tissues. A healthy level of mobility can actually help you develop the flexibility of your muscles and is important for avoiding stiffness and injuries. There are also certain circumstances where hypermobility may be developed through rigorous training, for example, dancing at an elite level. However, for many hypermobile people, it is an inherited trait that is more of a hindrance than a help. During high school, not even doctors seemed to understand this distinction. Several tried to evaluate my level of hypermobility by trying to stretch my hamstrings back towards my ears and told me the solution to my problems was to stretch more! But of course, for my body, stretching more didn’t mean stretching more deeply, it meant pulling my joints to the very edge of their range of motion, making it look like I was stretching further while actually making me more prone to further joint dislocations. Many years of useless appointments and awkward conversations like the one I had with Michelle left me with quite the complex. Why couldn’t I stretch properly? Why couldn’t I do the splits? There were plenty of students at my school who could do that and they didn’t even have a “condition,” so what I had couldn’t be that serious, right? So why was I coming home in tears because I couldn’t take the pain anymore? Why couldn’t I hop on the monkey bars without my elbows sliding out of their sockets? A year ago, I discovered that I was not in fact “just” hypermobile, but that I had hypermobile spectrum disorder (formerly known as joint hypermobility syndrome). This disorder is linked to the Ehler-Danlos syndromes and can affect the structure of the body’s soft tissues. This can not only cause widespread chronic pain and joint dislocations, but also problems with the skin, heart, blood vessels and digestive organs, just to name a few. This family of disorders affects different people in different ways and to different extents. Ironically, one of the main pieces of advice I have received from the team heading up my rehabilitation is to limit how far and how often I stretch. Increasing the flexibility of my muscles is not an asset to me like it would be to a gymnast or a dancer. There is too much potential to inadvertently loosen my joints further, inhibiting my body’s stability and proprioception, putting me at risk of injuries and falls. While the confusion between mobility and flexibility may seem harmless at first, I firmly believe that it leads to real problems — from the public perception that hypermobility is always harmless or even desirable, to doctors and physical therapists who do not know how to diagnose or treat hypermobility-related disorders, to the patients themselves, who may not understand their own bodies and therefore not know how to advocate effectively for their own care. So next time you find yourself having a conversation like the one I had with my friend Michelle, do better than I did. Let them know that there is a difference between mobility and flexibility, and that there are circumstances where being hypermobile is in fact a serious medical condition that can be accompanied by many complications. Help spread awareness about the complex and challenging nature of hypermobility-related disorders and help us all be better understood and cared for.Further reading: The Healthline website provides a clear explanation of the difference between mobility and flexibility and how healthy individuals can achieve a balance of both for overall health. The Hypermobility Syndromes Association provides a great explanation of the difference between hypermobility, hypermobility syndrome, hypermobile spectrum disorder and the Ehlers-Danlos syndromes. I think it’s a great first read for someone newly diagnosed with a hypermobility-related disorder or for their loved ones. The Ehlers-Danlos Society website is a phenomenal resource for in-depth information about hypermobile spectrum disorder and the different variants of Ehlers-Danlos syndrome. This is the place to go to find out more about specific symptoms, diagnostic criteria, news, research and a global database of hypermobility-friendly professionals.

Community Voices

Advice needed from bendy friends!

Fellow Hypermobile friends...how do you deal with a dislocation if you're by yourself?

Yesterday I had the upsetting experience of having a knee dislocation while I was alone (have not had a full dislocation in that joint before).

My partner wasn't answering his phone and the couple of friends that I am close enough with to feel comfortable calling for help were all out of town for summer. I didn't want to go to the hospital because I felt like it wasn't really an emergency per say but I really couldn't walk or move.

Fortunately my partner picked up the phone a bit later but I don't want to be so helpless next time...what would you have done if you were me?

7 people are talking about this
Community Voices

Advice needed from bendy friends!

Fellow Hypermobile friends...how do you deal with a dislocation if you're by yourself?

Yesterday I had the upsetting experience of having a knee dislocation while I was alone (have not had a full dislocation in that joint before).

My partner wasn't answering his phone and the couple of friends that I am close enough with to feel comfortable calling for help were all out of town for summer. I didn't want to go to the hospital because I felt like it wasn't really an emergency per say but I really couldn't walk or move.

Fortunately my partner picked up the phone a bit later but I don't want to be so helpless next time...what would you have done if you were me?

7 people are talking about this
Community Voices

Advice needed from bendy friends!

Fellow Hypermobile friends...how do you deal with a dislocation if you're by yourself?

Yesterday I had the upsetting experience of having a knee dislocation while I was alone (have not had a full dislocation in that joint before).

My partner wasn't answering his phone and the couple of friends that I am close enough with to feel comfortable calling for help were all out of town for summer. I didn't want to go to the hospital because I felt like it wasn't really an emergency per say but I really couldn't walk or move.

Fortunately my partner picked up the phone a bit later but I don't want to be so helpless next time...what would you have done if you were me?

7 people are talking about this
Steffie S

Finding Out My Stroke Symptoms Were Really Hemiplegic Migraine

We were out to dinner to celebrate our daughter’s birthday. I had migraine starting out the evening, but fought on through and painted on my smile. My many medical conditions make daily living a gargantuan task and my pain levels are always high. I am lucky if I can physically get out of bed each morning, but today I had forced myself up and out. As the meals arrived I did not want to eat as I was starting to feel nauseous. I needed a quiet dark room, not a packed, noisy and bright restaurant. Gosh it was bright; the lights were glaring! I made it home and straight into bed. I was in absolute agony. I managed to mumble an unusual request that scared my family. They know I am I fighter. The pain I am in daily, I have gotten so good at hiding from the world, but not from them. I asked, “if I still had this migraine in the morning could I go to hospital because it is so severe.” My family went into emergency mode and rushed me to hospital. They did not call an ambulance because we lived so remotely. It would have been over an hour before the ambulance got to us, due to our location, and by that time they could be at the hospital with me in the car. I was getting rapidly worse throughout the journey. My speech was slurred if I had energy to speak. I was slumped in the seat. Once at the hospital my family transferred me to a wheelchair and rushed me into the accident and emergency department. The nurse on duty took one look at me and stated she was not happy that I had not been brought in by ambulance as I appeared to be having a stroke. There was no time for discussion right then because I was not with them. I had totally gone. My vision, hearing and comprehension had gone and I seemed to drift in and out of consciousness. I was rushed through to treatment and hooked up to various machines. While tests were carried out and blood draws taken, I was admitted to stay overnight. My family reluctantly went home. When they returned the next day I was not quite in the state they left me. I was awake and alert. But my face was still a little droopy and a dull headache lingered, but I could talk and the paralysis on the right hand side of my body now felt like pins and needles. I was still a little weak. They were informed by the doctor that I had not had a stroke, but was suspected to have had a TIA, which is a mini stroke. But nothing would be confirmed until the results came back the next day. Tomorrow came and my family were given the news that I had not had a stroke or TIA. The reality of the situation was that I had hemiplegic migraine. I was seen by the specialist and discharged with follow up appointments. Hemiplegic migraine often presents like a stroke. If you see anyone complaining of migraine, don’t think it’s just a headache, think FAST. You might just save someone’s life or stop a serious accident happening because people who suffer don’t get or know the warning signs of an attack. FAST Face is droopyArm weakness (cannot hold above head)Speech is slurredTime to call the emergency service I am lucky not to have had a migraine attack as bad as the first one, although I have had a few bad migraine attacks since. Maybe because I know my triggers I can spot when a migraine is coming and rest. I was scared when the migraine was more severe than normal, as were my family, but I am blessed to have their love and support. Migraine attacks are not just headaches, sometimes they are debilitating.