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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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Thanks soooo much! I was literally just preparing info for my doc and realized that the sympathomimetic effects of ritalin might be contraindicated in hyper POTS. The warnings (from rxlist) are nothing to ignore:@SDSue- Good luck with the Ritalin. I found it helps keep my BP up better than midodrine does. However, I have to take a tiny dose because it also tends to aggravate my hyper-POTS type symptoms and can give me tachy as well.
When I was looking into using it, I was surprised to see that it was "approved" for use in POTS so maybe that will help you get a script from your doctor.
Adults
Sudden death, stroke, and myocardial infarction have been reported in adults taking stimulant drugs at usual doses for ADHD. Although the role of stimulants in these adult cases is also unknown, adults have a greater likelihood than children of having serious structural cardiac abnormalities, cardiomyopathy, serious heart rhythm abnormalities, coronary artery disease, or other serious cardiac problems. Adults with such abnormalities should also generally not be treated with stimulant drugs.
@SDSue I found that Adderall worked better for me than Ritalin. It is 4 different amphet salts with different half lives so it was "smoother' for me.My POTS doc actually recommended that I change to Adderall rather than Ritalin as he says he has better success with it for his POTS patients but I haven't tried that yet.
Nope, but I think that I am "covered" for the supplements they offer. (That is from memory, haven't looked at it recently). Also, I don't take Adderall anymore but it was helpful at the time.Are you doing the Synergy thing, too, and have you noticed a difference?
Thanks @Sushi - I got my Rx for Ritalin today (yay!) so I now have both options available and will try each. First, however, I need to order the KPax. Are you doing the Synergy thing, too, and have you noticed a difference?
Trying to keep my hopes at a reasonable level!
SDSue,It took me about a month to gradually get up to the full dose of KPax Immune. Then I added in the methylphenidate (generic ritalin). I started with 5 mg of methylphenidate in the morning, and it was too much. I felt wired, headachy, and just plain ill.
For the past week I've taken just one dose of 2.5 mg methylphenidate in the morning along with 4 tablets of KPax Immune twice per day. While i didn't feel much, looking back on the week I realized a few things:
1. I mentally feel more like myself. I have a desire to plan and execute, which I haven't had since falling ill.
2. I accomplished several things that had been on my to-do list for months - follow-up stuff like making appointments and placing orders.
3. I enjoyed talking with a friend on the phone rather than just enduring it.
4. I felt a little hope for the future rather than the underlying sense of impending doom.
I crashed myself in the process, so caution is needed. Dr. Kaiser, the instigator of the Synergy Trial, is very adamant that participants not increase activity for at least 3 months even if they feel like it. Lesson learned? Probably not lol.
Confounding factor: I was also able to get back on Famvir last week, as my liver enzymes had returned to normal.
This is the main reason I started this trial. I am awful at implementing a balanced approach at supplementation. If nothing else, I know that I am getting a decent multi with most of the things I've tried on my own to incorporate on my own.Independently of what you use, I think we all need a good multivitamin, because or some reason we cannot absolve nutrients in the cells,. My LP showed malnutrition!!! Despite all the juicing, eating healthy.....
I think I have been in the more active side because since the beginning I used supplements, and I can see a difference after being on them for a few months: From fatigue to fantastic Vit, Or the all In one (Dr Yasko one). Just compare labels and go high on Bs. I am not doctor and you knwo what make sense for each of you. This is my humble experience.
This is the sort a response I suspected we might see from stimulants: I expect that some patients may find the boost to be helpful, both mentally and physically, esp in the short term, but I have deep doubts about whether any stimulant will prove to be a protective treatment or long term solution for ME.I crashed myself in the process, so caution is needed.
You're welcome, Bob! I'm sorry to hear of your severe crashes. Before I was diagnosed with ME/CFS, I crashed myself so severely, repeatedly, that I was in bed for nearly a year. I live in fear of that happening again and appreciate your kind warning.Thanks for posting your experiences, Sue.
This is the sort a response I suspected we might see from stimulants: I expect that some patients may find the boost to be helpful, both mentally and physically, esp in the short term, but I have deep doubts about whether any stimulant will prove to be a protective treatment or long term solution for ME.
A successful treatment shouldn't lead to a relapse (i.e. a patient deteriorating when undergoing the treatment).
In my opinion, and personal experience, a relapse is exactly what a treatment should be protecting us from. So from a personal perspective, I wouldn't touch any stimulants with a barge pole because (like many of us) I don't experience crashes, but I experience CRASHES. (i.e. crashes from hell that can last years.) If there was a high success rate in a rigorous trial, then I might be tempted to give it a go. But otherwise I'll probably stay clear.
Hi Sushi and all,This is great--so happy for you! Have you ever tried Adderall instead of ritalin? My doc prescribed both for me (at different times) and Adderall was better for me. Also a tiny dose--2 - 3 mgs.
Sushi
Hi @freshbrew -Hi Sushi and all,
Adderall helps me to a point in many areas such as : gives me a bit of hope in the day, increases circulation and BP, gives me energy, allows me to be upright for a bit.
Being on Adderall allows me to get out of bed, shower, even stretch on "good days."
The adderall helps after a bath or shower to decrease the warm water crash effect on my body.
Adderall does assist my brain fog, energy level and helps to get my circulation and low blood pressure functioning a bit better.
I was started out in 2008 on 5 mg (child dose) and eventually tolerated 20 mg three times a day. I have not wanted or needed more than that.
I crash on or off the Adderall everyday at about 2 to 3 pm. So at least with the Adderall I have a bit of energy before my usual crash.
Albeit I am completely disabled and housebound even on Adderall as the disabling effects of the cfs/m.e. even on Adderall do not allow me to work, socialize etc.
I do not take the Adderall on days when my symptoms are at their worst. No need for energy or a burst of hope from Adderall if I know I am down for the count that day anyway.
I have no withdrawal effects from not taking Adderall for a few days.
Dr. Montoya (Stanford) has been my m.d. since 2008. I've advanced through the antivirals to Valcyte 900 mg once a day for over a year. No improvement.
I am in the category of long term cfs/m.e (over 14 years) so recovery is basically nul and void per common sense reality of trends in our community thus far.
Adderall is a C2 prescription so you have to get it from a M.D. who can write C2 prescriptions (like a Psychiatrist).
Hope this info helps someone. We are all unique bodies suffering a horrific Living Dead Disease.
Thank you Bella SCHi @freshbrew -
I've been a patient of Dr Montoya's since 2008 as well...After I suffered dehydration and was dropped from the Synergy trial, one of Dr. Montoya's assistants wrote me a script for Ritalin that I took with my own combo of supplements. I took it for several months and recently stopped taking the Ritalin. I wasn't feeling much of a difference -especially after being quite ill and bedbound for almost 4 months from late October through February. As the weather was changing and I wanted to plant some veggies in my garden, one of the key side effects of Ritalin is that is causes your body to overheat much more easily. As I have issues with my ability to regulate body temps- I can get really super cold and then can get very warm, it made sense to stop the Ritalin. So with warmer weather coming up, be careful if you are taking Ritalin and make sure that you stay super hydrated and out of hot sun.
Thank you Bella SC
I will be extra careful in Sun on adderall thanks to your post.
Questions for you in hopes to rule in/ our other causes of your overheating while gardening:
1. Is your free t3 low?
2. Are you positive for hhv6?
Reason: the above apply to me and have caused my history of overheating issues way back before adderall.
I only overheat on adderall if my m.e./ cfs symptoms are at their worst.
My low t3 and hhv6 seem to be the culprits of my long history , random at times, of overheating dating back to the late 80s.
BTW you can Google and find a great hhv6 site if it applies to you.
Let me know if you cannot find.
3. Do you have history of low or low normal blood pressure?
Reason I ask: issues with electrolyte imbalance in some of us when trying to stay hydrated.
you say you stay hydrated well.
In those of us m.e./ cfs with low to low normal BP,
overhydrating without having enough salt ( prefer sea salt, best for me is pink himalayan) it makes other m.e./ cfs symptoms worse than the dehydration felt.
It also immensely depletes potassium when overhydrating with free waterwater in those of us who have low , low normal BP.
I.e, do doctors and medical staff compliment you on your " good blood pressure " now? ( 120-130/70-80)
Was your BP lower in your younger years I.e. 90-100 / 60s to 70 before m.e./ cfs hardened your arteries to raise it little by little TO the current so- called " normal?"
Then you too , like me, need to add sea salt to your water when hydrating to keep your electrolytes balanced.
Just sharing that which I learned the hard way.
Wishing you and all here many good moments today
Hi Bella SC And all,Hello @freshbrew !
Thanks for all the great information. I always learn so much on this site and as I consider myself pretty well educated on me/cfs, it's amazing how in-depth the research is that you have done. I realize that my brain fog has impacted me more than I've realized when reading what you're sharing. Thank you for reaching out and sharing.
So to answer your questions, yes,
1. I have hhv6. as for
2. free t3 I'm not sure...
.I am hypo-thyroid and pushed my doc to look at t3, t4 and reverse t3, etc. It's been like pulling teeth to get more testing beyond tsh. I take synthroid for my low thyroid.
3. My blood pressure is typically very low as well- 90-107/ 60....it rarely peaks up above this and I'm 59.
As you were saying with hydrating, I too, have realized that Ive needed more salt in my diet.
Being a super healthy eater, I cut a lot of salt out, but have added that back in recently as I started reading more.
I also use Pink Himalayan salt.
For awhile, I would get an odd sore spot on my bottom lip whenever I ate the Pink Salt...seems to have also calmed down. None of my docs could ever explain why that was happening.
Ive also been drinking alkaline water...since I have entero virus -specifically Echo Virus 30, and it's transmitted by water, Ive been hyper vigilant about the water I drink. I started by boiling all my drinking water and now just go to the water store and schlep 3 gallon bottles of filtered alkaline water.
Can you tell me more about how cfs hardens our arteries?
Would love to know more about this and what you've read....
I also have high cholesterol but don't eat a lot of high cholesterol foods. weird...
There sure is a lot of weird stuff that comes along with cfs isn't there?
It's really a full time job dealing with a chronic illness like me/cfs.
I appreciate your sharing. It helps me so much to hear what others are doing, have learned, etc.
Thank you so very much!