Yolaclover Posted July 2, 2011 Report Share Posted July 2, 2011 So, it has been a very difficult week, and my birthday was on Sunday! Everyone wants to take me out to dinner and I love going out, but i have felt so, so bad and to top it off, i'm not getting much sleep because my head, neck and back are killing me. I haven't been out to dinner at all So my lovely and awesome neuro prescribed topamax and I started and the night I started I had a new weird symptom. I felt paralyzed in my sleep, but I wasn't paralyzed because I could move my hands, feet and everything else, it was this strange momentary feeling. And now, lucky me, it is happening a lot!!!! I did not take the Topamax last night and I still had it happen to me many times. I wake up feeling very bad, nausea, massive pins and needles, especially in hands, feet and the latest pins and needles place is in my privates area!!!So, I'm having a lumbar spine MRI tomorrow.also! I saw an MCAD specialist yesterday, I'm going to do some other testing for him on the day I do my spine MRI (tomorrow at NYU hospital). I'm doing my due diligence, if my POTS is being caused by something I will find out what it is. Any insight into all of this POTS weirdness would be deeply appreciated. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 2, 2011 Report Share Posted July 2, 2011 It would be really nice if they could do the MRI from the neck down. Anyway they might do that?So, what tests do you have to do for the MCAD? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 2, 2011 Report Share Posted July 2, 2011 Well, Happy Birthday! Just a few thoughts. I had a terrible reaction to Topamax - it GAVE me a migraine (never had migraines before -- (took a migraine medication and GOT a migraine). It also made me feel even more dizzy and weird in the head than usual. My whole body felt bad - it just knocked me down. The other thought -- have you looked into what Levaquin can do to people? The sleep paralysis you describe is exactly what happened to me along with a horrifying array of other symptoms - crisis level symptoms that lasted several months. Back then I didn't make the connection because I only took one Levaquin pill and it was a month before before all the craziness began. Once I started thinking about everything I had done or taken in the month preceding these events, I realized I had taken Levaquin and looked up the drug. I was shocked at what I found out. You can have a delayed reaction to it and the symptoms can be really bad and last a really long time. I can't prove it was the Levaquin in my case, but I definitely suspect it. Not saying this happened to you - just wanted to make you aware that it could have. I'm really hoping you get answers ...or just plain feel better soon. I can feel your pain through your writing.I agree with Sue - since you are having all these neck symptoms, why not look at that too? Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 2, 2011 Report Share Posted July 2, 2011 Happy Belated Birthday! I'm sorry it has been such a rough week.Topamax can cause some really strange symptoms, so the new symptoms that you have could be a result of the new med. Some people are really sensitive to Topamax and have to start out with the sprinkles dose and slowly work up to a full dose. Even though you stopped the Topamax you could still be experiencing some side effects from it.I tried Topamax last year, and it was really tough to get used to. The side effects are strange. I ended up having to stop the med and find a different treatment for migraines.I hope that the MRI will give some helpful information to your doctors, and I hope you feel better soon.Rachel Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted July 2, 2011 Author Report Share Posted July 2, 2011 Naomi, Sue Thank you! Yes, neuro is trying to get the neck MRI approved, for some reason this is proving harder. I have read about that Levaquin too!!! I did not take the whole course but i did take some and I remember it was not good, not good at all, it was after I got POTS so I'm sure that didn't help! oh lord, what a mess!I see a therapist and he says he believes me how bad I feel but he is sure the tests will show nothing and all of this is just a manifestation of my pent up feelings from a horrible childhood. Yesterday I told him in no uncertain terms that, no, maybe a headache, maybe a little sleeplessness or teeth grinding, but not this, this is off the charts. This is my Hiroshima. This is me going to bed terrified that I won't wake up in the morning. I have been pushing myself very hard to be normal despite feeling like I'm about to go meet Elisabeth Edwards. I ran 3 miles, I went to the Korean Spa, I clean my kitchen. I'm scared I'm hurting myself more than helping. Not sure! Thanks friends, your support means everything for real.xxoxoox Quote Link to comment Share on other sites More sharing options...
Godsgal Posted July 2, 2011 Report Share Posted July 2, 2011 Just wanted to throw in that I have the mast cell issues and I have had some CRAZY pins/needles/numbness type symptoms. My face, my neck, shoulders, the gums in my mouth, the roof of my mouth, feet, hands. I have had it so tight around my throat it feels like a rope around my neck. I have had the MRI on the spine, nerve conduction study, and it's all normal. I was told it has to do with the mast cells. I have also had some very strange things happen to me while sleeping. I have had some of the craziest things happen to me and apparently it's all mast cell related. I have been half asleep in bed and all of a sudden shot up involuntarily in bed and then fallen back down, all involuntary. This crazy condition we have....man! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Report Share Posted July 2, 2011 I think I know what you are talking about, are you alseep and kind of awake but your body can't move??? I get this all the time and have since I was a teenager and if so I also struggle to talk. It is called, "sleep paralysis". If you Google it you will find that people think that they think they are being abducted by aliens and all kinds of things. It used to scare me so bad that I would be afraid to go back to sleep. Do to my memory right know, I prefer if this is it that you look it up. The knock on my noggin is stopping recall to a lot of stored info on board. Topamax will give you tingling pins and needles feeling when you start it. It goes away after a few weeks, It's great for migraines, helps pain, and added factor is weight loss. It is a seizure med but usually started out in a very low dose and worked up to your doc decided dose. I hope SLEEP PARALYSIS is all that is wrong with you, but you need to call your doc to make sure.Bellamia ~ x's Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Report Share Posted July 2, 2011 The other thing that was happening to me was my arms and legs feet were falling to sleep recently also.My Calcium Channel Blocker had been increased I was taking 4 pills of 120 mg er between the hours of 5 am and 4 pm. Most people would take one every 8 hours. Also my Gastrocrom at 1/2 the dose 4..ampules were both in question as making my body fall asleep. the topamax was a long time med for migrains. They pulled one CCB away and 3 Gastrocrom. I had other symptoms. Swelling feet, swelling face, falling asleep of body parts laying and standing reallly bad. It has really helped pulling these meds but which one is the culprit????? Now I itch and rash away like crazy. For those of you with mast cell, I found you can make your own cream with the viles of Gastrocrom. Dr Castells couldn't give me the dirctions, but I saw it online. Good to know as insurance won't pay for cream.Anyway, I hope one of these answers helps you out or at least someone here. I'm itching and scratching away ~ Take care all ~love ~BellaMia ~ Quote Link to comment Share on other sites More sharing options...
lizababy Posted July 4, 2011 Report Share Posted July 4, 2011 That pins and needles feeling is a common side effect with Topomax. When I first started it, I remember having to pull my car over because I would randomly get the feeling up my driving leg or in my hands. It became much more prevalent and occurred more as the dosage increased.I believe it took around 9 months of being on the medication before the side effects finally wore off. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted July 5, 2011 Author Report Share Posted July 5, 2011 I took the topamax for just 2 days. The pins and needles have been ongoing and progressive Quote Link to comment Share on other sites More sharing options...
lizababy Posted July 5, 2011 Report Share Posted July 5, 2011 I took the topamax for just 2 days. The pins and needles have been ongoing and progressiveI was unsure if the pins and needles feelings began with the Topamax or prior.I, too, get very random pins and needles feelings up and down my hands and feet. They do not believe it is Topamax related as I have been on it for so long that it is unlikely that I would suddenly one day start getting side effects again after 8 years. I have yet to figure out what causes this and the doctors haven't seemed too concerned about it. Good Luck! Quote Link to comment Share on other sites More sharing options...
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