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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Damaged by drugs
- Thread starter digital dog
- Start date
Gingergrrl
Senior Member
- Messages
- 16,171
No problem and wish I could be of more help!
Am so glad to hear you say that. Please keep fighting and I believe this episode will pass no matter how horrible it is.
You could be right and when I had a neurotoxic reaction to a different medication (Levaquin) it took me a very long time to recover from it. Am not saying it will take you as long but it is good to know so you can be prepared.
When you had said that you felt suicidal and were going to end it if this did not resolve in a few weeks, I was thinking that talking w/a skilled therapist might help just to get the frustration out and learn some safe coping techniques (not that it would solve the medical problem itself vs. figure out ways to cope with it). But it is definitely not for everyone and only you know what is best for you and I wish you the best moving forward.
Mohawk1995
Senior Member
- Messages
- 287
Our son had massive difficulties with medications. After observing his reactions we chose a pattern of always starting any new medication at below recommended dosage to test tolerance first prior to ramping up to "therapeutic" level. Many medications we were unable to even get to the recommended level. If they did not work, we stopped them. Some medications need to be given time and as long as they did not make him worse we stuck with them long enough to see. In the end he only really tolerated and appeared to benefit from 3 medications: Zoloft at very minimal dose, Celebrex at lowest dose possible and Prilosec. All other medicines either created negative responses (Topamax, Immetrex, Depakote, Cymbalta) or were not effective long term (Indomethacine, Provigil, Wellbutrin,).
To me the negative responses to medications appeared to be two fold. One was side effects to the medication such as the hives he developed while taking Cymbalta. The other response was hypersensitivity (which I think also occured with most side effects). This hypersensitivity was really across the board with all medications, but some were more tolerable or gave us results so it was worth pursuing. My opinion on the hypersensitivity is that his Nervous System was highly sensitized (True Central Sensitization not the UK NHS BS) and created a whole body sensitivity including the processes and organs the medicine was intended to help.
Interestingly now that he has made an apparent full recovery, he has very "normal" responses to medications and is able to tolerate normal doses of medications (at least to the ones he has taken recently). I also think that the hypersensitivity will be something researchers such as those at Stanford and in Norway will have to take into account especially treating those who have severe ME/CFS. They may have to slowly introduce new medications and ramp up over time to not overwhelm the patient's system. That would mean using "Sub-therapeutic doses" and gradually increasing over a period of months. For those with Mild ME/CFS it seems to me that they could go a little faster in upping the dose, but if done too aggressively could create the crashes many have mentioned.
Just my thoughts on observations and what I know about how the body functions as a whole. The particulars will have to be determined by the researchers and physicians.
To me the negative responses to medications appeared to be two fold. One was side effects to the medication such as the hives he developed while taking Cymbalta. The other response was hypersensitivity (which I think also occured with most side effects). This hypersensitivity was really across the board with all medications, but some were more tolerable or gave us results so it was worth pursuing. My opinion on the hypersensitivity is that his Nervous System was highly sensitized (True Central Sensitization not the UK NHS BS) and created a whole body sensitivity including the processes and organs the medicine was intended to help.
Interestingly now that he has made an apparent full recovery, he has very "normal" responses to medications and is able to tolerate normal doses of medications (at least to the ones he has taken recently). I also think that the hypersensitivity will be something researchers such as those at Stanford and in Norway will have to take into account especially treating those who have severe ME/CFS. They may have to slowly introduce new medications and ramp up over time to not overwhelm the patient's system. That would mean using "Sub-therapeutic doses" and gradually increasing over a period of months. For those with Mild ME/CFS it seems to me that they could go a little faster in upping the dose, but if done too aggressively could create the crashes many have mentioned.
Just my thoughts on observations and what I know about how the body functions as a whole. The particulars will have to be determined by the researchers and physicians.
Kharren
Hopeful opptomist
- Messages
- 19
- Location
- Hermosa Beach Calfornia
Is there a good medication or intervention for myalgia pain? Ibuprofen and Tylenol heating pad and or hot baths help somewhat but not fully. The myalgia pain can be excruciating.
Injecting a high dose of hydroxoB12 twice a weeks helps me a lot with pain. And not overworking muscles, of course.
Kharren
Hopeful opptomist
- Messages
- 19
- Location
- Hermosa Beach Calfornia
thank you, what MD prescribes the B12 injections? Do you self admin?
Dr de Meirleir in Brussels. The nurses at my local GP's clinic taught me how to do intramuscular injections myself.
Gingergrrl
Senior Member
- Messages
- 16,171
It was very severe and I was hospitalized for all kinds of tests to rule out that the reaction was not due to something else (vs. a reaction to Levaquin). Ultimately all doctors, including the ENT who gave me the Levaquin samples, agreed that it was the cause. I also consulted w/a specialist in adverse med events and an orthopedist who both said they would "bet their entire careers" that it was a Levaquin reaction b/c it matched with the known literature on FQ antibiotics at that time (2010), I was healthy prior to Levaquin, (at that time) and the reaction occurred while taking the med and nearly tore my triceps tendon.
I absolutely did not believe that I would recover from it, and my right arm, shoulder, neck, etc, still has chronic pain & weakness to this day if I type too much or overuse the muscle. But it is nothing like it was in 2010 when it took me six months of PT just to be able to grip and write with a pen again. Some of these meds are no joke and I was not warned of the side effects and would never have consented to take it had I known. Had I known and consented, I would feel differently (which is the case with all treatments that I try now).