_{What about Topiramate}?
_Topiramate

I was reading some studies done on weight loss and IIH and came this drug was mentioned. It mentioned that it is an antiepileptic drug and helped in reduction of symptoms and caused weight loss. I am going to do some more reading on this but was wondering if anyone else has tried this or heard of anyone taking this?

Topirimate is Topomax, also called Dopamax because a great number of users report cognitive issues while taking this medication. The weight loss is a side effect, not a guarantee, but many have reported improvements in symptoms. If you can handle feeling dopey, and I mean really feeling like you have lost a bunch of your ability to think straight, then discuss the possibility with your doctors.

I was on Edecrin, a milder drug yet similar to Topomax. I noticed the difference right away and was amazed when I stopped taking them just how stupid I had become!

Yes, it is Topamax. It made my headaches instantly worse, but I know there are other people that didn't mind it. Every one is different, so I think you just need to review the research and talk to your doctor about the possible side effects versus benefits. I think you'll find the most recent med information at ihrfoundation.org and they'll be glad to answer any questions you might have.

Wow! Thanks Wylee!! That is what I was wanting to know. I don't need anything that makes you feel like that. I will just keep working with this Diamox.

I started having a mild headache everyday since last week. At my last eye appointment my papilliedema had not gotten any better. I went back again to the eye doc yesterday and he said since I seem to be the same he is going to call up a neuro opthalmalogist that he knows and may refer me to see him. I don't know if it is the diamox not working or what. I have still been trying to work and when we get busy I start to lose my balance easy and still get tired really quick. I might talk this topomax over with my neurologist next week. Thanks for the info guys!!

I'm so sorry you're still having a rough time, but admire your determination to get on with things. I hope you do get referred to the Neuro-Ophthal because I think it would be very beneficial to you, so I'll keep my fingers crossed that happens for you. Keep us updated and in the meantime you might find this booklet from our partner organisation helpful. Fatigue and neurological conditions

Heidi

Hi Amberly
I just wanted to give you a more positive view on Topiramate. I have been taking Topiramate since July this year, I had tried to take Diamox before that but it just made me violently sick and feel awful so I refused to take it. My headaches where really bad and I was constantly in daily pain. I was having LP's every 4-5 months and ending up in A&E (ER) at least once a month on morphine due to pain. Since July my headaches have been reduced to taking paracetamol for the pain and having a huge attack once a fortnight. I haven't been to A&E for my IH since and haven't had a LP (7 months) and pressure is still down. I have lost 2 stone since being on the Topiramate, the only downside is I have acid problems from being on them. I'm on anti-acid tablets to help with the heartburn and ingestion and I have to watch my stools as I have had bright green stools which is a sign of a problem with the gallbladder and my stomach not absorbing my food.

I hope this has been useful for you xxx

Thanks, sinister416! My neurologist gave a prescription for topamax. I have not started it yet. I also found out that I have PCOS and along with that the problem of insulin resistance and high level of testosterone. I feel half crazy now. I just want to go to sleep and wake up normal again!!!! I know I can be normal again it has just been so much to take in at once. I hate taking medication and always have hated to take any. I have been doing lots of reading about how to treat PCOS and the possible connection of PCOS to IIH. Does anyone else have this issue??? My gyno doc wants me to start a low dose birth control and metformin. There have been some studies done that show metformin works for women with PCOS. Which also helps the IIH.

I know you all feel the same way I do right now or have at some point. I am sooooo confused :frustrated

Hi Amberly! I have PCOS and I currently take 500mg Metformin daily to control that. I was actually diagnosed with PCOS years before developing IIH. A reproductive endocrinologist (RE) diagnosed, and began treating, my PCOS at age 31 when I was trying to have a baby. I developed IIH at age 37. My RE feels that my PCOS is not related to my IIH, as he says he treats PCOS in many, many women every day and almost never sees a case of IIH along with it. He feels if the two conditions were related, he'd see it all the time and he does not.

But ... that being said ... that's just one doc's opinion! I too have seen the studies online linking the two conditions. I really don't know. But as a person who has both conditions, I do treat them both. 500 mg Metformin daily for the PCOS and 1250 mg Diamox daily for the IIH. And for me, working to maintain a healthy weight helps to manage both.

I know it's all so overwhelming and confusing ... I'm curious how they diagnosed your PCOS? Bloodwork along with ultrasound of the ovaries are the accepted standard, I believe. If you have any questions, I'm happy to share my experience with you. Just let me know. *hugs*

Hi BananasMom,
Thanks for the reply. I had my appointment with the endocrinologist and he put me on 500 mg of Metformin. He also said he doesn't think IIH and PCOS are related. I told him about what I had read and he said well in the world of medicine it changes everyday. They suggest that it might be related but in a few years they might say it is not. As for now he is sticking to ....they are not related. I was actually in the process of working with my gyno about some menstrual issues I was having when all this IIH stuff started up. So, I found out about both of them at the same time. PCOS has probably been around for awhile I was just thinking it was just hormones and it would stop. They did blood work and with my symptoms came to the conclusion that I have PCOS.
I now have to take this weight loss seriously. They are all telling me I have to lose weight.
How was your experience taking the metformin at first? I have had some people they could not take it and others say once you get past the first few weeks it is ok. I will start taking it tomorrow so....I am hoping that I will be able to take it.

Hi again, Amberly! I've actually tolerated the Metformin really well. For the first week or so that I was on it, I experienced some of the intestinal side effects they talk about, but I hung in there with it and was fine after the first week. 500mg is a pretty low dose, so hopefully you will be okay with it, too. Did you start it today? How's it going so far?

Well, I am actually suppose to take 500mg twice a day. I just started with one for now because I was so nauseated I could hardly do anything. It has been 6 days now that I have been taking it and I have not had the upset stomach anymore. I am also trying sooo hard to eat like a good girl!! ;)
I am hoping this is the start of some major changes for my health. I appreciate the advice and concern.

Do you take the metformin to help with the PCOS? For the high insulin level? Did you have weight to lose?

I too have PCO's and was diagnosed with them 10 years after the IIH diagnosis, although I was later told the two could be related as my IIH trigger is hormonal. Unlike the both of you I've not been given anything for them. I was only aware that Metformin was used for diabetes. I will certainly ask my Gynaecologist about it, so I've learned something new today.

I am glad you found the discussion on this a little helpful heidi! Let me know what your doc says.

Hi all! :hello:

If you are considering Topirimate or Topamax, I'd just like to say that since my last post regarding this subject was made, I have been diagnosed with an official Topirimate allergy. Unsuprisingly! Lol x

This obviously explains all of the symptoms that I was experiencing. Apparently, resistance to this drug is a bit more common, but I was told that because of the lack of studies on the drug, they were not able to judge or discover how easy it is to develop an allergy to Topirimate.

Personally I know of about four friends who have taken Topirimate, and three people have had a reaction to it. The one person who hasn't had a reaction hasn't had many of the side effects, including weight loss, and her kidneys and liver have to be monitored constantly because of the ingredients of Topirimate. She has said she is sick of getting these blood tests done so often and regularly she is going to talk to her neurosurgeon about having a shunt inserted.

So I just wanted to make it clear to anyone reading my last post, I somehow have developed a Topirimate allergy and that is why I suffered all of the mild, bad and extremely bad side effects.

On the whole though, I think this has been a very balanced thread and is a great resource for anyone wishing to learn about Topirimate or Topamax. If you know of someone taking this medication, or you are someone taking this medication, feel free to add to the discussion dance

The more the merrier!

:flower:

Hi ive just seen my neurologist and he mentioned going on Topiramate, my eyesight has got worse im having an lp every 8 weeks. Diamox doesnt seem to be doing anything hes just put the dosage up to 1250 mg a day. The headaches are horrific im taking 8 cocodamol 30/500 a day plus tramadol 50 mg twice a day i just cant function some days i wish id hadnt woke up and theres plenty of days where i wish id never wake up again.

Having a LP every 8 weeks can cause a lot of damage..are they talking about a shunt placement or anything more permanent? Your body needs time to heal between punctures & scar tissue builds up with every procedure, plus the effects are short term..please do take care of yourself & talk to doctor about more effective treatments.

The neurologist mentioned a shunt but he doesnt want go down that root just yet wants try an stabilise the condition with drugs and lps hes not happy about the lp every 8 weeks wants to try get it to 3 times a year. I go liverpool eye hospital Monday 21st if my eyesight has got worse and is compamised the neurologist said have me straight back for a shunt or an operation on my eyes to relieve preassure. With you having more experience of this that me what do you think i should do next.

Wookie. I think that is an excellent plan. First and foremost, is to save your vision. If your eyesight has gotten worse, than talking about surgery would be appropriate. I realize that in all likelyhood, you will end up getting a shunt installed. But, keep in mind, that some people actually do find the right combo of meds that will keep their pressure down after having a lp, so no surgery would be needed. That is the better way to go. Diamox, especially, is an old drug, been around a long time, so they are well aware of long term useage, and it appears to be OK. So, see what the Ophthalmologist has to say, and in the meantime, keep track of your symptoms, write down each day how you feel, what makes things worse, what makes them better. Keep track of your pain level too. Having a journal like that is very useful for you and your docs.

Please let us know how things go. Will be

Im sorry i should have introduced myself im Paul, so much for advice and help i will keep a diary. It seems at the moment im getting maybe two weeks out of eight where i can just about function then everthing starts going downhill i.e blurred vision and headaches are unbearable most days i have an lp then for a week i suffer fom the low preassure headache last time didnt eat for four days i will write all this in diary like you have suggested so much again.

Paul, I agree with Linda..saving your vision is top priority. There are a lot of different meds out there, but if your vision is affected you may need to consider optic nerve fenetration or shunt options. I'm not sure how long you've been experimenting with meds, but they're obviously not working for you at this point. Hopefully the Ophthalmologist will be able to give you more insight on the 21st..keep us posted, & good luck!

Thank you all for the information I've read in this string. I am scheduled to see my neurologist tomorrow and will inquire with him about Topamax. I am currently on 1000mg DIamox 2x a day and 40m Laxis once daily, 1800mg Gabapentin for occipital neuralgia daily..., All feel lousy. My head pain is a bit better since the Lasox was added on 5/4 but I am weak and dizzy and just feel overall bad. The pain in my head is inconsistent. It gets really bad then gradually leaves only to return severe hours later. It is all driving me a bit insane.

Relli..that is so much medication..no wonder you feel lousy! At some point I really don't know if they're treating the condition or the side effects of all the meds and their interactions. I'd keep a symptom log including dose/time of meds, and definitely discuss with your doctor. Good luck!

Thanks! I am going to see what the doctor says tomorrow. I would love to come off of some of these medications. It is a lot and it is really draining. I am recording everything. I will be back either tomorrow or sometime this weekend with an update.