Odd Medicine Cocktail

[Random-Symptom Man]

Hi all,

I just wanted to give you all a positive update In hopes that the drug cocktail I’m on will help them. This is not a recommendation, but a point of data for the community. 

I’ve been on an odd cocktail of meds prescribed by docs at Johns Hopkins for the last few months:

- Olanzapine (very helpful)

- Cybalta (less helpful)

-Lamictal (useful for nerve pain)

-methyl-B-12 injections (extremely helpful)

While I’m not quite my healthy self, I’m closer to normal than I’ve been in years. My pots is nearly gone. No more heat intolerance. My GERD and gastric emptying are way better. My light sensitivity is gone. I have more energy. I can think a bit clearer. I had tremor, and it’s way down. The nerve pain is nearly gone. 

The B12 injections are amazing. I used to take methyl-b-12 orally plus a b-complex with methyl-folate. It did nothing for me. I still take the b-complex. The doctors don’t know why the cocktail is working, they just know it is. If I let the B-12 slide by a few days, I can really feel my symptoms coming back.

I know we’re just treating symptoms and not the cause, but I feel so much better I don’t care. My symptoms may return, but for now I have relief.

I hope this helps. 

dx: POTS with presyncope, anhydrosis, Mild ASMA, Brain Fog, Tremor, Light sensitivity, GERD, Flat Gate, Fatigue, Bell palsy, Gastric emptying, Fatty liver, Narcolepsy, and insomnia, REM sleep behavior disorder, Muscle Spasms, nausea, and more.

[Pistol]

@Random-Symptom Man - thank you for the update!!1 I am happy that the cocktail is helping you and I hope it continues. I too was on B12 injections for years and they helped a lot, I recently stopped them b/c my B12 levels were high ( above 1000 ) and so far I have not seen a difference to the negative since stopping the shots. Best of luck!!!!

[MTRJ75]

This is the kind of post I love to read. Congratulations and hope for continued recovery! 

B-12 shots were one of the first things the doctor offered me about five years ago when my initial dysautonomia symptoms started showing up (though I didn't know what it was for another couple of years).  I stopped them because I didn't feel any difference. Maybe I should request them again since my symptoms are different now. 

How do you know specifically which meds are helping what if you're on a bunch of them? I'm hardly ever able to tell what's helping what. 

[Pistol]

8 hours ago, MTRJ75 said:

How do you know specifically which meds are helping what if you're on a bunch of them? I'm hardly ever able to tell what's helping what. 

In my case I am on a LOAD of meds and each one was added to the last one, started on the lowest available dose and then slowly increased. That is how i know which one helps with what, for example: I am on Carvelidol 25 mg, which helps immensely with tachycardia,  and we slowly added Diltiazem ( increased from 30 mg to 180 mg ) which has really lowered my BP. Methylphenidate has improved my brain fog and SSRI has improved mood and also some of the POTS symptoms. I take more meds and each one helps for a specific symptoms. It is very important to keep track of what symptom the med is supposed to help and if it does. Some medications can help for several symptoms. Keeping a diary that lists each med you take, when you started it and how it affects you is very helpful for you and your doctors. It also will help you remember what med you did NOT tolerate. I have tried tons of meds for POTS that did not help or I could not tolerate and having a record of this is very helpful. 

[MTRJ75]

I take several supplements and I'm frequently changing them. The doctors who suggest them ask what's helping what and I usually have no idea. Even the medications usually cause more side effects than beneficial ones. Is it the CBD oil, the magnesium, the turmeric, the beta blocker, the SSRI? Then when I think something is helping some symptom, but it returns after a few weeks or when the doctor tells me certain meds take weeks to months to take effect...

It's generally like: Well, I'm gaining weight, I'm exhausted all the time, I still feel like I've been set on fire and beat with a baseball bat while on a roller coaster, but I don't seem to care as much. So you tell me doc, what med/supplement is doing what? 

[Pistol]

4 hours ago, MTRJ75 said:

So you tell me doc, what med/supplement is doing what? 

Especially with dysautonomia every person reacts differently to medications or supplements. Only YOU can tell how you feel when you take them. That is why a diary can be helpful.