Going back to Duke tomorrow

Well tomorrow I have my followup with Dr Adkins. At eight weeks, she usually has a resident do the followup, but I am grateful that because my case is “complicated” we will be seeing her. Not sure that much has changed…slowly titrating up on Topamax…up to 50 mg with no issues so far. Other meds are 50 mg of zoloft, 80 mg verapamil and 1 mg klonopin morning and night. I feel like the dysequilibrium is better but I am exhausted!! Seriously… So tired that I can barely get out of bed… I know it is the meds and I would like to stay “status quo” at this point and see how it goes… I did have a major migraine with dizzies and lots of pain this weekend but I blame that on major barometric pressure changes… So we shall see… She did talk about adding “diamox” to the mix, but I would prefer not to add any more drugs to this “cocktail mix”… Ugh…trying to stay positive here…at least I am no worse…and I know I need to give this time…but…geez!!! Cross your fingers for me friends!! Dee

good luck tomorrow. I hope she can fix the drugs so they work better for you.

Good Luck Dee!
Keep us posted. DOes Topamax usually cause fatigue? Were you more or less fatigued before starting it?
Kelley

I had some fatigue prior to Topamax with the klonopin but the combo is doing me in… Hoping dr Adkins will let me cut back a bit… We shall see… I guess I haven’t hit the magic 3 month number yet… But we shall see… The fatigue is debilitating !! Will keep you posted…

good luck with your appt. I am sorry to hear about the fatigue. That sounds like good news about the disequlibrium? I know I would give the world to have a reduction of that symptom, although I’m not sure if that’s the worst of your symptoms, as we all suffer with differing symptoms and varying intensities.

How did your appt go Dee?

Well I saw Dr Adkins again yesterday. I am only up to 50 mg Topamax and although she understands that we MAVers are med sensitive, she would like me to try to slowly titrate to 100 if possible. We talked about the incredible fatigue I am experiencing and she said that with the “cocktail” of klonopin, Topamax, zoloft and verapamil and Ativan as needed, it is absolutely normal that I would be exhausted. My body is being inundated with meds and if I feel better with a nap and am able to take a nap, she sai " allow yourself a nap"… Allow your brain to heal… I guess I do feel blessed that I am not working… I feel for those of you that do…I absolutely do not know how you do it…I could not… For me… This has been a long journey a ten year misdiagnosis at johns Hopkins o multiple sclerosis and taking those meds unnecessarily … Also Lyme disease and now this… I am putting my trust and hope into dr Adkins and duke to understanding and helping me through this disease, if nothing else, the kindness and empathy shown there is worth the trip! So I will continue listening to my body, resting as need be, light exercise, good nutrition and taking meds and prayin that I get closer to a place where I can again enjoy my life with my wonderful friends and family. I wish the same to all of you! Dee

Oh my…that cocktail of meds seems like so much. I hope your brain adjusts and heals and that you get back to normal…

Hugs

good luck to you, Dee.
I know for me this illness, itself, makes me so incredibly fatigued. It is indescribable. NEver knew fatigue like this existed. I’m sure that cocktail isn’t helping, but if it makes you well, that would be wonderful!!

— Begin quote from “dee”

Well tomorrow I have my followup with Dr Adkins…slowly titrating up on Topamax…up to 50 mg with no issues so far. Other meds are 50 mg of zoloft, 80 mg verapamil and 1 mg klonopin morning and night… She did talk about adding “diamox” to the mix

— End quote

Hi Dee – a little concerned about the cocktail of drugs you’ve got going on and Adkins suggesting adding in yet one more! Are you confident in this approach from the doc?

My notes from Baloh and multi-pharmacy:

The question of whether multiple drugs cuts down further on frequency is really something we don’t know. There’s no evidence in prescribing multi-pharmacy for migraine. Baloh is hesitant to do so because you start to get into issues of interactions. Baloh would like to see evidence that even one drug works for MAV. Before considering more than one he would like to see just one working over a period of time. If Baloh had the answers to this right now, he’d be the only one because nobody else does. People can certainly try things (multi-pharm) but be careful because there can potentially be short term and long term side effects. Again, having a 50% reduction in symptoms is a very good outcome because there will also be spontaneous remissions as well. Baloh is cautious with multi-pharmacy because he has little experience with prescribing this way nor has he seen data to support it. He certainly does see increased side effects.

Not trying to freak you out but wanted to make sure you had that perspective too.

Cheers … Scott :slight_smile:

Scott…thanks for your concern … I have also replied to your pm. Believe me when I say that I do not take meds lightly. I research them carefully and make an informed decision about taking them. Although I am taking a " poly pharmacy" right now, some of the meds are multi purpose and most are not even at a therapeutic dose. I just reached 50 mg after 2 months on Topamax and that is where I plan to stay. I just increased zoloft to 50 from 25 but I believe I will go back to 25 and probably discontinue it. The verapamil is in lieu of a blood pressure med I was taking for years. They have had good results with it with MAV and I have been taking only 80 mg with no ill effects. Most people take milligrams according to their weight and I certainly weigh more than 80 pounds! But it does a good job with my pressure and controls my headaches so I’ve stayed there. The klonopin am and pm are 1mg as needed. The Ativan is used when I have a bout of something ive had all my life called vocal chord dysfunction… Not something I take everyday… Only in emergency… So please know that I do not take meds lightly at all and would prefer that I didn’t have to take anything!! That is the plan at some point anyhow!!my internist and cardiologist are both good friends and I do nothing without consulting with them as well… Thanks again for your input and all the great info on this site… Dee

As an additional note, i have been taking verapamil, zoloft and klonopin for a year through the Georgetown University Migraine Clinic. Dr Adkins only added the Topamax to the other meds that i have been taking for awhile to see if i could get better relief of my symptoms…and although i have definitely had increased fatigue, i do feel that the lightheadedness is better although i have only been on the topamax for one month…time will tell!