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Symptom Morphing On New Med


#1

Hey everyone, I hope you’re well.

I am trialing Effexor again, but taking it much slower (on 8 beads a day for five days). All the medications
I have tried have given me new symptoms. Depakote gave me fatigue and visual snow which is still with me 3 months later. Effexor is giving me abdominal migraines (which I guess I got as a kid but forgot about) and splitting ear pain.

Has this happened to anyone else? that you get new symptoms on medications? I used to only really get head pressure and bouts of dizziness but depakote opened a can of worms that I am trying to put back in, and the creation of new symptoms gives me pause for continuing on effexor or other medications in general.

My questions to you all is:

Have medications caused new migranious symptoms that they have then have gone away for you from using that medication (not medication specific side effects al la low heart rate or dry eyes)?

Have people managed to recover from MAV with out medication? I am toying with pursuing no medication for a while instead.


#2

Hey Hale,

Sorry to hear you are struggling.

Speaking personally (only having trialled two meds) it was obvious the second one was helping within days. However other classes of medication may take longer.

Be careful of confirmation bias and unfairly blaming MAV symptoms on the meds. Ear pain is a classic MAV symptom (and btw, imho the pain represents healing so don’t hate it too much :wink: ) Remember symptoms will fluctuate and the illness goes through different phases of things morphing as it goes so it’s often hard to tell how useful a med is and what’s causing what. If it’s a classic symptom on the MAV list though, probably not the med.

That said your bowel trouble might have been related as many meds tend to slow the gut down?

Also none of the meds are silver bullets unless you are one of the lucky few. So expect a lot of breakthrough symptoms and relapses even whilst on a med.

Also remember that some side effects fade. Dry mouth and overwhelming lethargy eventually wained after a few months of taking Ami. So sometimes it’s worth being patient and persevering.

If it’s borderline it might be worth seeing if side effects lessen over time.

I was on Amitriptyline for 1.5 years and gave it up just over a year ago. It was tough to begin with but I survive without now and just handle the occasional relapse that tend to last less long now and usually down to something obvious I’ve done like too much coffee.

It’s a balance really. If, on balance, the meds improve your life quality then take em. If not then don’t. I was a zombie without Ami at one point and it was critical for me to take it to have any kind of life. Others find they don’t need them and can control things with diet and lifestyle changes.

I was really lucky finding a working med with my second trial. It didn’t in any way mask all the symptoms or cure me though. That’s taken time. A loooong time. And sadly not over yet …

Good luck with the ‘crapshoot’ as they call it!


#3

Everything @turnitaround says is ‘spot on’. It’s hard to spot side effects sometimes because of the condition’s natural fluctuationing patterns. I haven’t taken Effexor so am unfamiliar with the number if beads per capsule. I find it amazing such a small dose over such a short period would do much of anything, either good or bad. Is there possibility you have allergy to it maybe. Are you particularly sensitive to many substances.

I take a betablocker which works differently however it appeared for a long time to do nothing at all but eventually after many months did start controlling existing symptoms. Didn’t give me any new ones though.

Some people get through without meds. If you read the Lauren Kossack link on this forum, she got better purely by diet. The diet she used was so similar to the John Hopkins Clinic one as to make little difference I’d say. Guess the severity of your condition would dictate whether you could manage without meds. Personally I tried for six months just doing VRT, not because I wanted to avoid meds but because I didn’t have a migraine diagnosis so they weren’t on offer anyway. The VRT just made me worse, and I am sure I wouldn’t have got back to where I am without meds. I woke up today with head pressure, semi-full ears and a stiff neck even on meds but I did have three symptom free days end if last week. Helen


#4

Thanks. I used to have stable symptoms for about 3 years before getting diagnosed, mainly head pressure and whooshes of dizziness. I trailed depakote for 3 weeks and it gave me a whole host of symptoms that my body is slowly recovering from. I normally only experience one symptom at a time. So it’s either dizziness, a full head or ear pain, never are they concurrent and I can feel them move from one area to the other. The issue is effoxor is adding another migraine symptom of abdominal migraines. Now I rotate through a full head, dizziness, fatigue and the stomach aches. It’s just frustrating to get new migraine symptoms, rather than less. I’ll probably stick it out for another week or two to see if it stabilizes at all. I do have my first neuro ent appointment tomorrow so I’ll ask then too. My primary headache doc is a bit stumped unfortunately


#5

Hello there, nothing much to add only that I take effexor (tablet) and had stomach aches initally, like abdominal migraine, it passed after about a week. If you can try stick with it, I’m finding it very effective and three months in, really starting to help now. If you read the information page on this drug there is a savage long list if side effects so its possible if you are med sensitive that these new sympthons are perhaps side effects. Hope of all works out for you, best of luck x


#6

Thanks guys. I appreciate the thoughts and insight. I’ll keep sticking it out. I am on a 1/5 of the 37.5mg starting dose, so I’ll add a few beads once/if the stomach aches go away.

Much appreciated.


#7

I gained some new migrainous symptoms after starting nortriptyline—way more light sensitivity and reactions to patterns (our shower tile, gingham shorts), more noise sensitivity too. I would also love to try being off medication since I’m not sure how much it has helped me (I thought it was doing quite a lot for a couple of weeks, now not so sure). But I think that may be frustration talking, since on the whole it seems like medications do help people improve, when the right med/dosage is found. If only that were straightforward to find. Wishing you luck.


#8

I actually can relate to this. My throat spasms seemed to be a new symptom when I got on Paxil and I still get them once in a while even though I’ve been off Paxil for a year now. Frustrating symptoms to have: difficulty swallowing/breathing/coughing, dizzy, and intense head pressure. I am doing much better now, but I still relapse into one or more of those symptoms from time to time. I hope your abdominal migraines pass soon. Effexor helps a lot of people it seems.


#9

Thanks. The stomach aches have become milder but they’re certainly migraine related. Same triggers set them off as anything else.

The effoxor has also amped up the visual snow a bit which is frustrating, as that feels like my worst symptom. Not sure if I should titrate back down or stay steady and see if it settles. I don’t want to do any more damage To my vision.


#10

I don’t take Effexor but it might be some consolation to know:-

Drug-induced visual side effects are, virtually always, reversible. I have often read this and besides have a brother who has an eye condition, is very med sensitive, and in chronic pain long-term due to spinal damage who has had horrendeous drug side effects many times including once total double vision, all of which just went away once the offending drug was out of his system, so I’d say your fear’s pretty unfounded there. Helen


#11

Visual snow has nothing to do with your eyes. It’s in your brain. Effexor has reduced my visual symptoms but it’s taking months.


#12

Helen, thanks for the note. I’d agree, but it was the act of starting then stopping depakote which gave me the visual snow to begin with.

Flutters, I agree it’s not a problem with my eyeballs, but it’s a problem with my visual system.


#13

Very sorry to hear that. The trouble is these powerful brain altering drugs we end up being forced to try to try to get our lives back. Just goes to show. We gather visual info with our eyes but it’s our brain that dictates what we actually see. (I’ve very personal exp. on that believe me, and not from my MAV either). Hope yr brain soon sorts it for you but as @flutters says it’s long term project really. Helen


#14

Hey all,

Just wanted to post a quick update. The effexor is quickly working on the dizziness/headaches. I am on about 10 effexor beads at night time and the rocking, headpain and other typical MAV symptoms have greatly reduced. I have been able to give the computer a longer use and the stomach aches have abated. The only thing it hasn’t touched yet is the visual issues (snow, afterimages, etc), it has perhaps even made it moderately worse. I am hoping that I’ll be able to continue titrating up to where I have symptom control. Thanks for the encouragement to stick through the stomach aches.

Elah


#15

Hi elah, that’s great news and so quick too. What do the 10 beads equate to in mgs? If it’s a low dose that’s really positive for you. Some symptoms do flare up a little I found when tirating up and starting it but they will settle. Best of luck with next dose :four_leaf_clover:


#16

Hi Elah
Thats a great response so far. I have just started Venlafaxine yesterday but a tiny dose until i get used to it.
I so hope I get the same results as yourself. Thankfully i dont get visual snow
Jo x


#17

Nin, its roughly 4mg. Little more than 1/10 of the starting pill of 37.5 MG ER. I am going to keep going up one bead a week until I am covering the symptoms, then hopefully I can start exercising again which would be wonderful.

I am out on a scientific limb here but the reason I think the effexor has worked particularly well for me is because I have generally suffered from other neurological symptoms that could crassly be indicative of “low” serotonin & norepinephrine (childhood adhd, anxiety, depression).

JoJo, I hope you see a benefit. I am super med sensitive, and I think my large starting dose of depakote is what sent me here. Just take it slow, and don’t expect to see any benefit too quickly. I was mentally ready to give it 6 months after getting up to a full dose.


#18

Ive started on 37.5mg tablet but cut it into quarters…i will go up to half when i feel the time is right.
Keep up the good work
Jo x


#19

Hey all, I’d appreciate some insight here. The Effexor keeps making my visual snow worse, such that it is becoming hard to read. I am thinking of titrating back down to where I can bear the visual snow and then try and find a different medication, which is a bummer because the Effexor has been working so well for all my other symptoms. I am a bit bummed about this.


#20

Hi elah, sorry to hear this, it’s disappointing alright but don’t despair just yet. Why don’t you drop back a couple of beads and see if it stabalize. If so leave as is for a week and try again. My neuro said to give side effects time to fade away maybe 10 to 14 days, drop back and try again. I’m encouraging this for you in light of the fact that it’s helping in so many other ways. Obviously if after another attempt, it’s the same then you may need to trial another.
Your dose is very small, do you think it’s a bit of a flare up, have you been over doing it do you think? It can be hard to distinguish between side effects and the joys of a mav flare up… Not… :blush:
Best of luck with whatever decision you reach, take care