IIH

What are some coping mechanisms when dealing with the pain? I have had migraines since I was a child but over a year ago I was diagnosed with Idiopathic Intracranial Hypertension (Psuedotumor Cerebi). Now on top of the pain, aura, etc I also get back, neck pain, lightheadedness, dizziness, and severe pain behind the eyes and from my shoulders up. Any day where the pain is less than a 7 is a blessing. I still work full time and push myself through the pain, recently I've noticed myself feeling much worse despite losing weight and my eye doctor saying he didn't see edema behind my eyes. Today it was so bad I went into the restroom and cried and asked myself how much longer can I do this, working full time trying to live life as normally as possible. I can't even walk long distances anymore (I used to walk a few miles a day) without getting short of breath, very light headed, and dizzy and without sharp pain. My family suggested getting a portable wheelchair, which I think at this point I may need. Any advice would be greatly appreciated. Thank you! #chronicmigraine #Migraine #IntracranialHypertension #IdiopathicIntracranialHypertension #IIH #iihwarrior #ChronicPain #RareDisease #CheckInWithMe #BackPain #TheMighty

Champions adjust, and I am currently learning this the hard way but that's okay. I have my faith and my support system. I try to count my blessings. I started having blackouts. I can't ignore it. I see spots and sometimes can't see anything. I constantly feel the pressure in my head now the lowest it goes is a 6, sometimes I get random stabbing pains in my eyes. I've been getting episodes of weakness where I feel lightheaded and dizzy and I lose my balance, it makes me concerned that I will pass out, especially since I'm still working full time as a Medical Receptionist. My vision has worsened. My glasses are now too weak of a prescription. I go to Lens crafters Saturday thank God. I can't drive, which I never really did to begin with besides practicing. I realized this when my husband told me "don't feel bad because even if you wanted to drive I wouldn't let you right now because I'd be afraid of what could happen if you have an episode on the road." It never even occured to me until now. I count my blessings daily. I'm alive I'm fighting. We will find a cure. We will not suffer alone. 👊🏽 #IdiopathicIntracranialHypertension #IntracranialHypertension #RareDisease #ChronicIllness #ChronicPain #ChronicMigraineSyndrome #Migraine #PsuedotumorCerebi #rarediseaseawareness #TheMighty #MightyTogether #CheckInWithMe #mightystrong #ChampionsAdjust #StayStrong #CheerMeOn #grateful #TheLittleThings

When I was diagnosed with Intercranial Hypertension my Neurologist told me I had Pseudotumor Cerebi, I asked him what it was and he explained, I asked him the risks and he didn't tell me anything except I need to lose weight. I went home and looked it up on my one and found it on the government medical library website, thank God I did. We planned on flying up to see my baby niece and in laws this year, little did I know the risks in flying with Intercranial Hypertension were. Once I saw that I decided I'm never flying again. I've had four spinal taps in the last year and 2 of them failed and caused me severe pain and the wort after effects. Is there anything that alleviates pressure besides a spinal tap? I'm afraid to get one again. I've lost 30 lbs already and still losing but still suffering. Stay strong everyone 💪🏽
#wearethemighty #ChronicPain
#ChronicIllness #RareDisease #IIH #iihwarrior #Migraine #Vertigo #VestibularMigraine #chronicmigraine #IntercranialHypertension #CheckInWithMe #checkupwithme #StayStrong #Pain #chronic #neurology

It’s been a while since I posted on here. So many things have happened with my health it’s shitty as fuck my ribs are inflamed headaches are crazy had my 11th spinal tap and now they say I may not have the weird disease they’re confused about my condition.
I want to scream out to the world I started cutting last year I love my body and I’ve done in inconspicuous places and I tried to stop. But my PTSD has been triggered time and time again I just got engaged on Friday and by Sunday I was cutting and I did it again tonight. I did it on my inner thighs so nobody can see it’s like the stretch marks from giving birth to my children. I need to stop this I’ve spoken to my psychiatrist and we’re working on this but it does give somebody’s and then I feel horrible afterwards this is just crazy! I have a degree in clinical psych I’ve done all these papers I can diagnose and I’m so fucked up in the head it’s been five years dealing with these illnesses and now new things coming up when do I catch a break? It could be worse but I’m breaking down I feel defeated I don’t know what to do that’s all I can say for now as my head pound my ribs are swollen and I’m trying to fall asleep. Lord do universe please help me I try to do so much good but I can’t do it for myself I’m not stupid I’m not dumb although I feel it sometimes I’ve been OK but I’m just spiraling….. That’s all I can really say for now my thyroid is Out of wack my glands are swollen so it’s hard to talk just give me a break that’s all I need

Anyone on here suffer with iih too? Would be really cool to have people who actually understand what i go through everyday :)

#IIH #ChronicIlless #chronicallyill #ChronicMigraines #IdiopathicIntracranialHypertension #ChronicFatigue #MentalHealth #MentalIllness

Hi, I finally took the plunge: this is my first post to the Mighty!

Until a year ago, I had *finally* managed to find a team of drs. who communicated with one another and supported me in coordinating my complex medical care. (Like so many of you, I had been misdiagnosed for decades, but was so incredibly relieved and grateful for having come upon a team of drs. who understood my case and dxd me properly.)

Then ... over the past year or so, I learned I have a multitude of additional and rare genetic and congenital health problems. (I've listed some of them below**, because I don't believe the specifics are relevant to my question.)

While my new team of specialists know one another – they're among a literal handful of specialists who treat complex cases such as mine – they are located in different parts of the US, using different EMRs, following different protocols related to HIPAA-compliant access to my medical records, ranging from moderately accessible to almost completely inaccessible with respect to patient portal messaging, etc. etc.

On some level I understand, given the ridiculously short amount of time allocated for each appointment by insurance companies, and, the ensuing post-appt. efforts made / required by many drs to, say, finalize documentation of the visit, prescribe Rxs, tests, procedures, etc. As a result I am filled with gratitude for those drs. who spend more than the 15 minute (or so) allocated appointment time adhered to by most drs.

That said, due to the diversity – in geography, medical record practices (EMRS and patient portals), local/state prescription policies and lab test capacity / availability, etc., etc. – I have not been nearly as successful in coordinating my care of my new crackerjack team of drs.

Does anyone have any advice for me?

Thanks so much!
~~~~~~~~~~~~~~~~
**In short: while I'd been diagnosed with hEDS, I learned I had all the accompanying septad dxs and then some; multiple primary immune deficiency diseases (PIDDs); autoinflammatory disease; periodic recurring fever (due to a pathogenic variant of a genetic mutation); mast cell disease; chronic bacterial and viral infections; autoimmune diseases; chronic Lyme, Babesiosis, etc. (I was infected for 1.5 years in 1988, and again for a few months only in 2017, before being dx'd ), autoimmune diseases, etc. etc.

#ChronicPain #PrimaryImmunodeficiency #EhlersDanlosSyndrome #JointHypermobilitySyndrome #IIH
#MastCellActivationDisorder #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #DegenerativeDiscDisease #sjogrens #ChronicLymeDisease #LymeDisease #Babesiosis