Last year I was taking Valtrex for herpes. I was on it once daily for about a month to stop outbreaks (OB) because everytime I had an OB, the dizziness would go wild. It appeared that the Valtrex kicked off something in my gut where it just always seemed to be sort of upset and making noises down there all the time (singing sounds!). It stopped eventually but then I trialled that damned Topamax 2 weeks ago and it’s all back again.
So I’m wondering, is this upset gut part and parcel of migraine or is it some freak out my body has to the recent meds? Do any of you guys put up with any digestion issues that were not there before MAV settled in?
The local naturopath said I should take tons of pro-biotics to sort it all out. I think I’ll give it a shot.
Hi Scott,
Irritable Bowel Syndrome (IBS) runs in my family and I have a touch of it so it predates MAV manifestation, but it hasn’t been adversely affected by the medication that I’ve been taken really. Although, if I might be a bit ‘personal’, the meds can give you a bit of ‘wind’, that is, let’s say, quite noticeable amongst company so best controlled at such times! As we say in Oz, an ‘SBD’ (silent but deadly :oops: ) and sometimes noisy rumbling just to top it off!!
I think that meds in general, can have an effect on your gut, so your local naturopath may have something for you. Of course, when migraine was doing its worst to me initially, I had much difficulty with diahorea that also came with the nausea, which were specific to the MAV and not the IBS.
How are your symptoms currently Scott, have they improved much since you got yourself off the Topomax and what meds are you taking at present?
Thanks for the info … yeah, likely the meds that have done my gut in I think. My gut has not been the same though for about a year. I’m in Sydney so know what your talking about :D.
I’m actually getting better and better believe it or not. One week after stopping the SSRI, the dizziness started and was non-stop for 3 weeks. Two doses of Topamax really blew the lid off of this and now, for the last week, I’m slowly rising from the ashes. Almost no dizziness. Just some slight dysequilibrium and head fog. I still don’t feel particularly stable though. I know too well how easily I can fall through the ice again.
Wasn’t quite sure what you meant by that question considering the subject of IBS and rumbling tummies and SBD’s (lol)!!!
If you’re wondering how I’m travelling (which I’m sure that was what you were meaning!!), I’m travelling quite well, thank you. With the aid of doubling my Rivotril (Klonopin) to .5mg in the morning and .5mg in the evening together with commencing a tricyclic antidepressant call Dothep (I started 25mg, and over a few weeks am now at 25mg x 3daily), I think I’ll sit on that for the time being. I’m weaning off Sandomigran from a whopping 7 tabs per day and now down to 3 and will reduce again to 2 tabs over next couple of days. I visited my neuro last week and he said that as both Rivotril and Dothep are also migraine preventatives, if they work, he’s happy for me to ditch the Sandomigran completely so that’s the plan.
I think I increased the Dothep a bit too quickly and haven’t felt completely well for the past few days but am starting to pick up again. I’ll just watch the outcome of that over the next week to see if I need to drop down by 25mg, hopefully it’ll settle. I just feel very slightly nauseous so I’ll hang in there as it appears to be settling.
My neuro was happy with my progress and instead of 4mthly apts which I’ve had for the past 2 years, he scheduled me for 6 months next visit as he’s quite pleased with my progress. So I’ll continue these two meds until then. The weather in Sydney has been so bad this past week and my car is at the panel beaters, I’m not sure that I feel a bit lousier because I’ve been stuck within my four walls and have got cabin fever!!!
It’s hard to gauge my ‘wellness’ as I don’t go to work and only do activities that don’t create any stress/anxiety, so have to expand my world a little now to ‘test the waters’ so-to-speak. I’m not better, but am much much better than 2 years ago, I’ve been told by my neuro that he expects even more improvement, so I’m choosing to trust his statement Scott, because I want to. I do think that I’ll be tied to my meds for quite some time though because I think they’re responsible to a great degree for my improvement and I’m sure I’ll know when the time is right, when to cut back.
Are you considering any further medication, where to from here for you Scott??
Regards Judy
Last year I was taking Valtrex for herpes. I was on it once daily for about a month to stop outbreaks (OB) because everytime I had an OB, the dizziness would go wild. It appeared that the Valtrex kicked off something in my gut where it just always seemed to be sort of upset and making noises down there all the time (singing sounds!). It stopped eventually but then I trialled that damned Topamax 2 weeks ago and it’s all back again.
So I’m wondering, is this upset gut part and parcel of migraine or is it some freak out my body has to the recent meds? Do any of you guys put up with any digestion issues that were not there before MAV settled in?
The local naturopath said I should take tons of pro-biotics to sort it all out. I think I’ll give it a shot.
Scott 8)
— End quote
Scott,
One of the side effects of Topomax is abdominal cramping. I expereinced it pretty nasty for about the first two weeks both times I tried Topomax. My ‘guesss’ is that from what you describe about previous problems from another med, this med may have an extra kick to the abdominal cramping. It went away for me after about a month to a month and a half. Other people on various forums I subscribe to, make the same complaint, and have said that it went away for them too.
Sorry for the delayed response. Glad you do feel so much better in comparion to how things were. I really hope these meds work for you and you are able to get back to work again. Is there any way you can slowly start exposing yourself to more things that may cause some anxiety in an attempt to get used to things and then not react to it? I know we’re all really different here but when I was really unwell, I would sometimes force myself into situations I was not comforatble with (that were previously not a problem) so that I didn’t develop some sort of entrenched fear over it. At one stage I was freaked out over just getting on a bus but I did it anyway and just kept at it until the fears melted away.
I don’t know what my next move is. The last 5 days have been really lousy again; tons of head and neck pain, some dizziness, and yesterday the feeling of anxiety again gaining the upper hand. I’m going to bump up the SJW today because my current problem seems like it might be fixable by an increase. I have been waking with mild palpitations too which is not a good sign at all. I really want to go to Canada to see the family in August which is a big trip from Sydney. I don’t want this garbage holding me back or detracting from the trip. I have that nortriptyline script sitting here … maybe I’ll have a go this week but I don’t have much faith in these meds anymore. I’d rather feel more human and dizzy then like a numbed out drone on an anti-depressant.
Brian - thanks for the info re the Topamax. My gut is still not right and it’s been 3 weeks now since the Topamax disaster. I’m downing probitics and some other stuff to hopefully see this through. But still it hangs around making me wonder if there’s more to it.
Gidday Scott
You’ve hit the nail on the head there with testing the waters to perhaps push my limits just a bit more. I’ve only been on the anti-depressants for about 4 weeks but just made it to the neuros recommended dose a couple of days ago, so they say I should feel the benefits in about 4-6 weeks. I think they have already started to kick in although I’m not feeling sluggish or dopey or anything so hopefully they’ll go well for me. Having said that, I’m starting to do a few more things ‘outside the square’, I’m going to the race course this week for a ladies day luncheon and general kick up the heels fun day. All the ladies are going by mini-bus, but I’ve decided to drive so I can judge when the time is right for me to take my leave, so that should be a bit of a stretch amongst all these nattering women who love a good drink too. I will be the gal with the jug of water sitting in front of me, but I could care less about that, I just like to be out and amongst it so that will be my pleasure!
I can well understand your trepidation about having to take the meds again, I never realised that there were so many side effects in trialling these drugs and the need to titrate up slowly and then down slowly too, if they don’t work. It really does your head in doesn’t it? You really need to get your MAV under control to manage a trip so far away, I’ve got a trip booked to Hamilton Island in October for my niece’s wedding and I’m already fretting about that - can’t imagine my 3 hour flight compared to your 20 hours (oh my god!).
Didn’t you mention in previous posts, that you had reached 100% or close to, not so long ago? I hope you can find something that works for you Scott without the awful side effects that you endured before. I’m not finding any side effects from my meds; Klonopin, and so far so good on the tricyclic antidepressant, Dothep (apart from a dry mouth mostly at night so I keep a glass of water on my bedside table). I had been taking Sandomigran for approx 2 years and it did give me a bad case of the ‘munchies’ :mrgreen: and a 10 kilo gain, but I’ve gone from 7 to 2 tabs and will be off them soon. I think the weight gain was worth it really, as it obviously did help me recover to about 60%, but am trying other preventatives that might get me further down the track.
Sounds like you’re in a difficult place now trying to weigh up the pro’s and con’s of your meds, I wish you luck with your decision.
It’s good to hear you don’t feel any SEs on the tricyclic. I’m thinking of grabbing the nortriptyline today actually. I am really fed up today. I may have some other thing going on too. About 10 years ago I was in Thailand and at the end of the trip got this really weird ill feeling - tired all the time, massive aches and pains all over and feeling quite low; it lasted for about 2 months. Since that trip I get hit with exactly that every so often (but burns out after about 2 weeks) and think that’s what is going on now maybe. Wonder if I picked up some weirdo viral thing over there. Whatever it is, it doesn’t mix well with migraine dizziness. My nervous system is just not up for this. If I can wait this out maybe everything else will be ok. Just don’t know.
Prof Halmagyi at RPA gave me a script for Prothiaden about one year ago which is the same one your on I think. He said it was his favourite of the class. My old boss is also on it and said she feels nothing in the SE dept. Perhaps that’s the med I should have tried all along! Well, I think the right move is to try nori first and then perhaps prothiaden if the nori is not tolerable.
Your trip north sounds like fun. You’ll be absolutely fine for 3 hours. You’re right though. Flying 25 hours is not a good plan when I’m feeling this unstable. I don’t want to be spending the first week trying to recover.
Scott, that’s very interesting about Dr Halmagyi’s preference for the prothiaden (Dothep), I’ll keep you posted on the outcome which I should start to feel within a few weeks. As my neuro told me and therefore my reason for being keen on this med is that it has a threefold benefit to me; it’s a migraine preventative, it’s anti-anxiety/anti-depression (and that’s been an issue for me since all this MAV stuff started) and it is also prescribed for back pain and I’ve had a spinal fusion about 14 years ago and have advanced arthritis around the surgery area. The other med Klonopin, has a combo effect for me too; migraine preventative, anti-anxiety and also aids a restless leg syndrome which I have. That great book everyone on this board recommends ‘Heal your Headache’ sais that the migraine preventatives all work well but it is better to choose ones which kill two birds with one stone. I’ve definitely hit on two meds which have multifaceted effects for me, I just hope they also knock the MAV on the head too!
That other condition you seem to be suffering from at the moment sounds like a nasty combination with the MAV, I hope it settles down for you. It sounds a bit like that Ross River Fever which we have in northern Queensland (I’m not suggesting that that’s your ailment of course, just noting the similarities of a disease which is transferred by mosquitos in a humid environment :? )which has fever and joint pain and sometimes a rash, did you ever get it checked out by your doctor and get a diagnosis? I reckon with all the humidity in Thailand, diseases carried by insects etc would be rife!
Keep us posted on your progress if you decide to have a go at the nortriptyline again. I wish you well. (PS: you gotta get sorted real quick so you can get on over to Canada for a bit of fun!!! )
Much good health to you Scott
regards
Judy
Scott, a friend of mine did pick up an ameobic dysentery while in Thailand 10 years ago. She said she could see how people in third world countries easily die of these types of things. Anyway, she didn’t, she just ended up having to take a ton of Flagyl. My point being, as you know, when you’re out of the country you exposed to who-knows-what. I’m also remembering, just now, of some friends of ours, who went on vacation. They both got sick, combo of vague malaise and GI disturbance. It took the husband months to get over it but the wife just kept getting sicker and sicker. She’s still not well and it’s been over a year - she’s down to about 75 pounds. She’s got a feeding tube, they’re just trying to keep her fed while they try to figure out what the heck is going on with her. Interestingly, she was anorectic as a teenager and more than one doctor has included anorexia nervosa among the differential diagnosis. Good luck with your TCA.
Judy, do you have a digital camera? I want shots of you dancing on tables i’ll PM you my email
Think I just sent some, let me know - kept the censored ones out! (lol). It was actually my son’s 18th birthday, but I don’t think anyone really believed that cause the adults were kicking up their heals and having too much fun!
:mrgreen: regards
Judy
Hi Scott I’ve had IBS most of my life, but not the normal IBS,
Mine is constipation bloating and constant sore tummy, Gas
The Zoloft has relieved it, my nerves in legs and back would play up late afternoon and night.
My Neuro did say that Migraine could affect the bowel,
Here is a small article on it, from migraine connection.
Judy my hubby came down with Ross river fever many years ago, it acted similarly to glandular fever, he had all the symptoms Scott talks about, but he also had with swollen glands in his neck and groin areas, it also left him feeling tired all the time for around one year, like chronic fatigue.
Yuck!
Isn’t Malaria common in Thailand?
Yes Jen, you’re right about Malaria up in Thailand, sounds nasty though for Scott. Sorry to hear about your hubby, hope he’s fully recovered now. You guys are probably in the vicinity of where those nasty little disease carrying mosquitos are?? They think they’ve even travelled as far south as some parts of Sydney!
Really… don’t you think we’ve got enough to contend with without having to suffer other disgusting conditions! :twisted:
When I start trying to tell him that I’m suffering from something, he sais “What have you got today love?” in a rather sarcastic, unsympathetic way. Lucky for him I kinda like having him around! :mrgreen:
Hi Scott, I’m up late cant sleep,
Just food for thought here, what about the 8th nerve being affected by the herpes?
I get cold sores too, about once a year and at one stage thought they could have gone to my ears or nerves in my brain,
I looked it up and yes it can happen.
You’ve probably already thought of that hey?
it would be natural to get dizzier if your system is down.
heres what DR Hain say’s. dizziness-and-balance.com/di … eurit.html
jen
