Help! Symptoms are driving me crazy!

[Ivana]

Hi all,

I was just wondering if anyone may know which of the following meds may be making me crazy.. Since I've started them, I've been experiencing really bad cytokine storms, which usually last 18+ hours, and ofcourse, as a result, the depression is sooo bad that I'm starting to worry myself.
I'm taking Inderal (beta blocker), florinef (fludrocortisone), slow k (this makes me feel sick), fluconazole, Nexavir injections, Zoloft, Rivotril, antioxidants, Glutamine and I've just finished a course of anti-biotics.

I honestly feel like I'm going insane most days, and when the cytokine storm hits, it's game over. I'm scared my doctor will want to put me in a hospital for depression, but they won't understand M.E and will dismiss it. I'm also seeing a psychologist and I'm generally ok when the symptoms aren't so bad (freezing cold, extreme weakness, migraines, nausea, vomiting etc) but when they hit, I feel like I'm going crazy. I am largely housebound.

Any help would be appreciated.

Best wishes,

Ivana

 

[Seven7]

Have you checked your blood pressure and your heart rate when you feel this way? My cfs Dr ask me to record when I feel a crash and I noticed when My HR start going over 140 when I feel this way. Once I control and lower the HR (take one getorade w salt or pedialite w salt) I feel better.

 

[maryb]

Ivana when the doctors at the hospital put me on beta blockers they made me feel quite ill ( I went in with unexplained symptoms, couldn't tolerate light, head pain etc - yeah we all know that one) what were they thinking of?? I used them for 2 weeks and felt shocking, one of the symptoms was feeling freezing cold, which is why your post caught my eye, if you look it up you should find this side effect. I don't know why you're on them but it is very dangerous to suddenly stop them.
My doc said I had to stay on them for a while, I just emptied all the little beads out out of the capsules, reduced them every day over a fortnight, another terrible exp of meds doing more harm than good, for me at least.

 

[Ivana]

thank you for your replies. Mary, which beta blocker are u on? My symptoms started before the beta blockers but have gotten much worse sinc. My doc put me on them coz of my superfast heart beat. Apparently i'm not meant to get many side effects but i feel worse since, ill ask my doc if i can stop.. Im also very scared about ending up in hospital for depression and anxiety

 

[justy]

Hi Ivana - i'm sorry but i'm not very knowledgeable about prescription drugs - i try not to take too many becuase of the risk of iatrogenic harm I was thinking though of excitotoxicity caused by the glutamine conversion to glutamate in the brain - so i googled it and got this:
Neurological Conditions

Adverse Glutamine side effects based on your neurological condition. The conversion of glutamine into glutamate can be problematic, as glutamate acts as an excitatory neurotransmitter. The conversion can produce an increased chance of seizures if you have a history of epilepsy. Additionally, you may experience changes in mentality if you have bipolar disorder or have episodes of mania (3, 4).

Fluconazole shouldnt be taken long term - just very short courses - its bad for the kidneys.
Hope this helps. Justy.

P.S i personally would cut back on any non essential drugs and try to get a clean slate to start from. I appreciate this may not be possible or safe for you to do. Have you noticed an increase in problems since starting any particular one of these drugs

 

[justy]

Hi, ive just seen that Zoloft is an SSRI antidepressant. How long have you been taking this for? have you changed the dosage of it recently (up or down)

Nausea and vomitting and confusion can be side effects of the fluconazole or inderal.

 

[maryb]

thank you for your replies. Mary, which beta blocker are u on? My symptoms started before the beta blockers but have gotten much worse sinc. My doc put me on them coz of my superfast heart beat. Apparently i'm not meant to get many side effects but i feel worse since, ill ask my doc if i can stop.. Im also very scared about ending up in hospital for depression and anxiety

Sorry Ivana I wasn't clear in my reply, I came off the beta blockers as soon as I could. I may have had arythmia which I get from time to time with the ME, but I was never told why the hospital prescribed them.
I would certainly discuss all your meds with your doc if you are feeling so bad, they are supposed to be helping not substituting one symptom for another. eg should you see a heart specialist to check why your heart is beating so fast? They just prescribe these things without ever determining causes for the symptoms.

 

[CJB]

I'd recommend calling your pharmacist first. You'll get more time and probably a more informed idea of which drugs/supplements might be likely culprits. Then you can call your doc and get a thumbs up/down for making a change. I took Zoloft for about 3 days and stopped cold because it was making me feel exactly as you're describing. But as I'm seeing in the posts in this thread, it could just as easily be one of the other drugs.

Hope you feel better very soon.

 

[Ivana]

Justy, i changd from prozac to zoloft about 3 weeks ago, i'm on the 50mg small dose.. I might have them changed again this week coz kdm told me theres better antidepressants thn zoloft which also help with muscle pain.. Fingers crossed! My insomnia and constant migraines have returned also

 

[Ivana]

sorry justy, i forgot to add that the insomnia has been worse since the glutamine, but my doc says its supposed to help with sleep.. Ive been taking the fluconazole for 3 months, a few docs have said that this is safe.. How do u know its unsafe?
The only thing ive noticed is that the cytokine storms started when i started on my treatment plan.. It starts off as a feeling of my brain swelling, then it feels like its letting go of my whole body, then the freezing cold and shivering, followed by muscle pain and overwhelming weakness where i cant move for 18hrs ive tried eliminating as many meds as i an, the only thing i can think of now would be the slow k.. Kdm said that one of the meds must have shaken up the cytokines in my brain so i'm gonna get ldn and hopefully it might help.. Thats if i dont go crazy beforehand

 

[taniaaust1]

I suggest to check out http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Dysautonomia-Treatments?hp_id=171 as it lists some of your meds and their side effects there in the treatment list.

Its probably a good idea to do a trial of withdrawing meds one or two at a time to try to work out exactly what is doing what (meds also may have unexpected side effects when taken together) but the beta blocker is a likely suspect of causing the depression and nervousness as the link above lists these as common side affects of it. (If it was me.. I'd start with thinking it could be the beta blocker).

Common symptoms of Florinef.. is nervousness and nausea... and it commonly can give bad headaches. (I think this one is most likely causing your headaches)

Most of the things you are on there can actually cause issues.

*Note.. dont stop anything unless under the guideance of your doctor.

What you described above with how things come in, sounds like some of my crashes.. maybe your symptoms are a worsening of your whole ME? (maybe caused by one of your drugs or maybe even your ME has shifted not related to the drugs)

I personally wouldnt be trying any different drugs until I'd figured out which ones you are on which are currently causing you issues. To keep switching drugs without knowing which is the cause may just further confuse what's going on now and what is doing what and may throw even more symptoms into your mix.

If things are too bad (which it sounds it is, if you are thinking you could end up in hospital), it may even be a good idea to stop all non essential things (in a safe manner.. eg under doctors guidence) and slowly try reintroducing one at a time to see what happens.

 

[rlc]

Hi Ivana, some of the drugs you are taking have bad interactions when taken together, I have done a search for you and these are the results http://www.drugs.com/interactions-check.php?drug_list=703-0,1096-0,3011-0,1100-633,1956-1266,1478-14269,1912-3654,2057-1348 there are five possible bad interactions from taking these combinations of drugs listed, I couldn’t enter antioxidants without knowing a brand name, and it didn’t have Rivotril as an option, but I looked it up and it is another name for Clonazepam, so I entered that.

Which of these bad interactions is causing your problem I don’t know, but you are going to need to get someone to do a major overhaul of the drugs you are being prescribed!! Print out the page at drugs,com and get your doctor to sort out your medications. Unfortunately doctors often prescribe drugs without looking up interactions which can cause all kinds of problems.

If anyone else reading thinks they may have problems with drug interactions and wants to check the medications they are on go, to this page at drugs.com and follow the instructions you can type in the name of all your medications and it will tell you if there are any interactions http://www.drugs.com/drug_interactions.html

Don’t worry Ivana it looks like you’re not going insane , but it looks like you have been prescribed drugs that are reacting badly and causing bad symptoms, once you have had your medications sorted out you should hopefully feel a lot better!

All the best

 

[Ai-Yai]

Hells cocktail... Are you REALLY need all these meds?
Do you feel that they make you better?
For what was 3 monthes of fluconazole? Are you HIV positive that you afraid of candidasis?
For what you are taking Clonazepam?

90% of drugs described by you are groundless and unproven for any kind of benefit. And the same time they may have serious harm effects by their own...even not talking about their all-together interaction.

There are no any safe meds exist and completely safe supplm. too!
"All is medication and All is poison. All depends on dosage and timeliness" (C), Hypocratus

I'd change a doc in your case.

Take care.

 

[Ivana]

thank you all for your replies.
Im way too tired to get into a debate about this.. But no i am not hiv positive, i have had candida for years.. Clonazopam is for sleep, it gives me a decent amount of sleep, and yes, a lot of us cfs patients are on it. Tania, thank you for your response, ill look into everything, and thank you to those who researched which meds might be workingagainst each other.. Ill call my doc today and see can start reducing.

Ivana

 

[mellster]

Hi Ivana - I am curious how your candida condition was determined. Systemic candidiasis is almost impossible to prove and controversial and usually you'd have to have some serious thrush or candida in your stomach or esophagus (by biopsy) to justify strong antifungals. Did you ever try nystatin for the candida? It usually is effective and very safe as it is approved for children/babys for thrush. Hope it gets better soon..

 

[Ivana]

Hi mellster, it was determined by stool testing. I developed it from antibiotic use a few yrs back, what my doc failed to tell me was that you cant eat sugar whilst u have it, so there i was eating 250g of choc per night (i've been doing this since i was a child) and particularly in the last few yrs when ihht class (to keep me awake) and the whole time was making the candida worse. Ive also got oesophagitis from it. I've tried nystatin, it didnt help. Both my ME docs agreed that maybe high dose fluconazole will help.

 

[Ema]

Please note that off topic posts regarding the use of prescription meds in ME/CFS have been moved to a new thread located here:

http://forums.phoenixrising.me/index.php?threads/prescription-drugs-use-in-me-cfs.17793/

 

[Ema]

My symptoms started before the beta blockers but have gotten much worse sinc. My doc put me on them coz of my superfast heart beat. Apparently i'm not meant to get many side effects but i feel worse since, ill ask my doc if i can stop..

Inderal can block thyroid hormone conversion and it is possible that some of your symptoms are related to hypothyroidism caused by the drug. It may have exacerbated an underlying tendency if your symptoms increased after you started the drug.

I would ask your doctor to run a FULL thyroid panel (especially including FT3 and FT4) as well as assessing all your meds interactions to determine if this may be a factor for you. T3 only treatment may be indicated if you continue the beta blocker but adrenals will need to be addressed as well prior to commencing therapy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1713718/

As far as the Slow-K, are you getting regular electrolyte/CMPs to monitor potassium levels? How much are you taking? Are you taking it with food and remaining upright for a few minutes?

 

[Crux]

Hi Ivana;
I've also been a long time lover of chocolate. Even though I began to have digestive trouble when I ate it, I continued, thinking it was from other causes, or that it was the type of chocolate that was the problem. These past years, I've been trying to find the substance in chocolate that caused my symptoms: digestive trouble, insomnia, anxiety, headaches, and other types of pain. Chocolate, with all its wonders, does contain a substantial amount of copper. If we consume high amounts of it relative to lower amounts of zinc, we can suffer.

I'm still in mourning from having to give it up, and I feel uncomfortable even bringing up the subject because I understand the deep attachment one can have to it. So maybe increasing Zinc could help with some of the negative symptoms...

 

[Ivana]

i know what u mean, crux.. Its soo hard without it.. Sometimes i slip up and have aa bit coz the craving is so bad.. U can try mixing rice milk with stevia, cocoa and cinammon and it tastes just like chocolate pudding.. Its the closest sugar free thing ive managed to come up with.. If ur in australia u can also buy something from woolworths called i'm sweet enough by sweet william.. Its sugar and lactose free chocolate.. Although nothing can replace kinder chocolatess (i had a few buenos the other day)