Waiting with IIH. How to cope?

Posted , 7 users are following.

Hi, my name is Victoria. I was diagnosed with IIH in February. Since then it's been a rocky road of trying medication after medication with no relief of symptoms and a lot of side effects on top of a lot of pain and vision disturbances. Two months ago, my neurologist said he couldn't assist further. I have an appointment at John Hopkins with their team but it's a two month wait without any medication and I have one month left to go. In the mean time, I had a spinal tap last week which went badly on the doctor's part. My pressure was at 47 and they only took me down to 35. I'm in a lot of pain due to the pressure and can feel it rising again already. I struggle with wanting to go to the ER but because my spinal tap had complications, it feels pointless to get help at the ER. What could they really do to help? I'm just feeling like waiting without medication is torture but I don't know what else to do while I'm waiting to meet those doctors. It's so hard to get people to understand how painful it is and to not get the help you need quick enough. Any advice or just comforting words? I'm feeling a little alone in this. Much luck to my fellow IIH warriors. - Victoria

0 likes, 12 replies

12 Replies

  • Posted

    Oh hun, you are not alone trust me!  I deal with that too, people not understanding.  It’s not just “a little headache”, it is a debilitating headache that puts you in bed for days at a time when it gets really bad.  It took my neurologist a year to realize I had IIH.  On my very first visit I asked him about IIH and he brushed it off and said he didn’t think that was it, then I found out he never looked at my MRI!  So frustrating!  I had to jump through more hoops to get put on the Diamox and then I finally did.  It gives you some bad side effects, but those do go away (for me they went away in about 3 weeks and the side effects come back when I have to get my Diamox increased, but then they go away again).  Unfortunately, it does sound like your spinal tap was done wrong 😢.  My advice would be, wait out the John Hopkins appointment, they should know what they are doing.  In the meantime, do some research on IIH so you’re better versed in the condition and can ask appropriate questions.  As for going to the ER, they give you pain meds and “band-aid” the migraine/headache, but if it’s too the point that the pain is unbearable then go to the ER.  Be sure you don’t take any pain meds on a regular basis because they’ll give you rebound headaches.

    • Posted

      Thanks for the response! Always good to know that I'm not alone! Yes, I plan on waiting until my JH appt. Wish me luck!

  • Posted

    Hold off from going to Er if possible. JH has some advanced treatments that you might be a candidate for...I was talking with them about the stenting for iih. No one in my area was doing stents. However I did find someone & the stent has helped with the headaches. I still have them but not the same degree. My biggest obstacle with iih now is memory, confusion & processing thoughts & speech. Oh and spelling...I came here looking to see if I was the only one with the memory issues. None of my drs want to admit or address that the iih could have caused it. I feel so alone & hopeless...

    • Posted

      So you personally recommend the stent? It's actually it's nice to hear from someone who has done exactly what I'm about to do. How often do you have the headaches and do you have any problems with your vision? Did they say that your stent won't have to be replaced? How did they insert the stent? Sorry,  I have so many questions. I have issues with memory also! I'm more forgetful than ever. It's so weird. I'm so sorry that you feel alone! It's a crazy journey that we're on. Is there speech therapy you could go to? I really hope things improve for you soon. Know that someone believes you on this side!

    • Posted

      Yes, I recommend the stent. I’ve had it 11 months now. I took blood thinners & asprin since the procedure. They do it just like the do heart stents. They go through the artery in the growing. I was given something to relax me for the procedure & I was woozy but not completely put under. I remember them talking to me during the procedure. Then you have to remain flat for up to 8 hours. It took several months after the stents and still being on topomax for the swelling of my optic nerves to go down. My vision didn’t go back to normal. I still have a blurry left eye. Some days are worse than others. I have mAny other medical problems. Neck injury, spinal fusion, thyroid removed , damaged parathyroid...and so on...I have headaches now, but they are not the same as I was having. So, I believe the headaches are from neck, the other conditions cause headaches too. I have majorly memory issues. I don’t have a problem speaking, it’s finding the words. My thinking or processing is slower. I would truly recommend you trying the stent. If it doesn’t work you could always do a shunt later. The shunt was just too invasive for me. I was scared to do it & so glad now that I didn’t...when is your procedure? I wish you luck & prayers. Keep me posted! 😊

    • Posted

      I forgot to tell you, 6 months after stents I had a follow up mrv. I’m about to go for my annual check up & 2mrv. My nuerologist knows about the memory issues. At first he said maybe it was the meds...now that I’m off the topomax I still have memory issues. I don’t think much research or testing has been done for drs to understand or know exactly how this illness affects people long term. 

    • Posted

      Thank you answering my questions. I'm going to respond to both of your messages here. You've really been a God sent because I didn't have a real life person whose been through this to talk to. I'm so sorry about your other health problems. I have a few other things going on as well. I went on a search of many other patient chats for people with IIH and there is a constant pattern of memory and cognitive issues. This is definitely connected to our diagnosis. I hope that our doctors can start to address this soon! These are valid concerns!

      And you're right. The shunt is a solid first step. I was nervous about the shunt for those reasons as well. I meet with the neurosurgeon on the 21st. So I will know everything then. I'm very nervous about the possibility of still being in pain after all this but I'm ready to have this done.

      How was your annual check up?

      Thank you so much for your advice.

  • Posted

    Hello Victoria,

    I went for my neurology check up today. I got good & dissappointing news. The good news, my stent is doing well & performing as it should be...he finally told me today that the memory loss & confusion is most definitely permanent. That it is damage to my brain from the pressure being so high for so long. He pretty much told me he had done all he could for my iih. He said if i started having vision issues, headaches like before, or any of the multiple symptoms to contact him. As for the processing & memory issues, just learn to cope with it....so hard to hear!

    I guess i should just be thankful that it was caught when it was, it sounds like it could have been so much worse. Good luck with your treatment & please keep me posted on your progress!


    • Posted

      I am so sorry to hear the news of your memory loss! I can imagine that this is so disappointing. I really am hoping the best for you!

      Thank you for being so open about your journey. My appointments are Monday and Thursday at JH. I hope I can get some help and move forward with the procedure. I will keep in touch! smile

    • Posted

      Hi, Windy. I realize I'm commenting on a post from several years ago -- kind of a long shot, but if you are still on here I would love to hear what your experience with memory, confusion & processing thoughts & speech has been since your post 4 years ago?

      I was just diagnosed with IIH and am in a lovely waiting game where I'm 2 months out at the soonest before I can be seen by a Neurologist, and from what I've read here, that is just the beginning of another long process for treatment. In the meantime, I am in such a fog -- I am easily disoriented, can't recall things with any sort of clarity, and my ability to process things well is limited to around 2-4 hours in a day where I feel like the brain fog has lifted. Oh! The other thing: I can type my thoughts better than I can vocalize them. If I were to try to speak what I communicated above, it would sound completely different. I have always been a sharp, analytical business leader. For the last two months I feel like a completely different person. My reading comprehension is poor and I have to review over and over to try to retain new information. Is this anything like your experience? How did you manage it?

      I sure hope you are well. It is so encouraging to know I am not alone in this.


  • Posted

    Hi Victoria and Windy

    My name is Ana . I was diagnosed with IIH in January. And my story is a lot like yours  Victoria. 

    I have my second appointment with the neurosurgeon at Mayo at the end of August. And reading your post, and Windy’s has been so helpful. 

    In a way I am excited about the surgery. About the future it may bring. But at te same time I am terrified. 

    How did your appointment go?

  • Posted

    Hi VAW1010,

    It looks like your post is really old, so not sure if you will see mine, but if you do, I just want you to know it has been nearly 14 months with no diagnosis. I have been having severe pressure in my head with extreme pain and throbbing in the back lower part of my head. The extreme pressure usually causes my BP and/or HR to rise SUDDENLY and increase ASTRONOMICALLY! The Cardiologists FINALLY have said the BP/HR fluctuations are NOT due to true hypertension and that an underlying condition is causing this.

    I have been to about 30 physicians/specialists and while they all tend to want to think this is all in my head (pardon the pun!), this is not made up! From my research, thanks to GOD, I believe undiagnosed Idiopathic Intracranial Hypertension is causing the problem (I have practically had to beg for a spinal tap, which is still not been done, but should be soon), which - because no one has been doing anything about all this - has caused my vertebral arteries (in the back of lower head) to become tortuous and they are compressing my medulla. This situation, by itself, is considered extremely rare, and most clinicians are UNFAMILIAR with the syndrome called Vertebral Artery Compression Syndrome.

    IIH, left untreated, can cause vision problems, possible hearing issues if tinnitus develops, and damage to neurons in the brain, which eventually can cause cognitive decline, memory issues, etc. This HAS to be caught early, so we all need to PRAY God reveals to Researchers about this awful condition and that physicians are MADE AWARE of Idiopathic Intracranial Hypertension and Vertebral Artery Compression Syndrome so that people are able to get lumbar punctures early while damage has not occurred.

    I would like to hear from anyone familiar, or not, with the two conditions I have listed above. I have done a lot of research on all this.



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