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Hi! I had one patient who had to start with “baby doses” of ketotifen to start because she noticed fatigue. The next time I spoke to her, she was up to 8mg/day (twice the recommended top dose). I’m not advocating such a large dose, but I think of her when considering folks who start ketotifen and suffer with some fatigue. Apparently, some of us get past it! 😉
Thanks for the reply!
On my day 3, I did notice significantly less fatigue, so it seems like I might be one of the lucky ones.
I have a related question: If the beneficial effects of Ketotifen are felt very quickly (within first day!), how likely is it that this is due to mast cells stabilization effect? Because, from what I’ve read, this usually takes some time. This would then imply that I am gaining benefits from the drug that is unrelated to the mast cell stabilization effect. Which would lead me to think it’s about H1 blocking. But then again, other H1 blockers are not nearly as effective.
Many of the patients I’ve seen with dumping syndrome do much better after starting on Zantac. Have you tried that yet?
I’ve tried Zantac, 75 mg, twice per day. I’ve been taking it for 2 days now, and have experienced a huge improvement in everything, like sinus congestion and post-nasal drip, and mental confusion.
Now… it seems like gluten-containing foods, and rice (which is perhaps a bit weird), trigger the strong symptoms that I have (and the triggers seem to be further enhanced if I also take a stimulant, like Ritalin or Modafinil), and I have been avoiding these foods for the last three days, so that improvement is partially due to that. However, the improvement was quite sudden, after taking Zantac, which is uncommon, so that I do think Zantac is doing something very good.
All of this makes me think if I actually have a mast cell problem, and not late dumping syndrome. I’ll have to experiment and read more. Oh, one more thing: another symptom that I get during the “episodes” are a few nasty aphthous stomatitis (maybe it’s relevant).
In any case, thanks so much!
Many of the patients I’ve seen with dumping syndrome do much better after starting on Zantac. Have you tried that yet?
Thanks for such a quick reply. 🙂
No, I have not tried Zantac. I did take H1 antihistamines, and only on occasion H2 antihistamines. I will give it a go, and report how it goes. Thanks!
Yes, I have had the exact same experience!
Interesting! Have you tried any other stimulant, like, for example, Modafinil?
What a fascinating question! I am eager to hear from others on this. I would add another question — some of us have stretchy skin, and a skin biopsy indicates abnormal collagen. We may have Classic EDS, or some sort of overlap syndrome — it is hard to know. But if the skin biopsy indicates the abnormal collagen, could those patients be more affected with what you describe? I wonder if you have had a skin biopsy? Thanks for sharing!
Thanks for the reply!
My guess would be that, indeed, if the skin biopsy indicates the abnormal collagen, then the traits I have listed would be (more) observable. In other words, I think that most of the effects of EDS on the reproductive system that I have listed are due to stretchy skin.
Unfortunately, I did not have a skin biopsy. I have seen 2 rheumatologists: one who is very knowledgeable, and who said I have an overlap between classical and hypermobile type, and another who is not very knowledgeable, and who said I have the hypermobility type.
I personally think I fit the classical type more. The reason is that my skin is quite elastic, my hypermobility is very extreme in fingers, hands, and feet, but not much elsewhere, and I experience only a modest amount of dislocations and subluxations, and they are practically pain-free (which is in contrast to the typical hypermobility EDS type).
Currently, I am suspected to have a mutation on COL1A1 or COL1A2, so that I would have an EDS/OI (osteogenesis imperfecta) overlap, since my bone density is very low. These genes are now being sequenced.
As a side note, my sister displays very similar traits to me, and she also seems to have many analogue traits with her reproductive system!
Somewhat related, and quite interestingly, my hands sometimes go numb and tingling when I experience more intense sexual pleasure. I don’t feel any pain, though. Anyone experience that?
Hi,
yes you are quite right with the ‘loss of body fluids’ as a potential cause for low potassium (hypokalemia). I have suffered from the symptoms you mentioned (severe sweating, particularly during the night – prior to wearing a Philadelphia collar) and the muscle twitching (fasciculations) and cramps and pre-cramps, I haven’t had the muscle stiffness upon over-stretching though but the rest I can relate to.Hi. Thanks for your reply!
During the time you suffered from hypokalemia, was there anything else abnormal in the blood tests?
I have to admit, I have also wondered how to ‘up’ my potassium levels, so thank you for raising this and prompting me to look into it! My food intake (which includes a banana every day) still doesn’t increase my levels by that much – though at the moment, although low, I am in the normal range.
A banana per day? That’s nothing! I eat AT LEAST 8 bananas per day. 😀 A very good source of potassium is coconut water – typically, 1 litre contains the daily recommended dose of potassium. Another good source are dates.
I’ve just been doing a little bit of research because I wondered if a deficiency in something else could contribute (i.e. something necessary to assist absorption/retention, or something) and I came across folic acid. Now I have to say that my symptoms haven’t been as bad since I have been supplementing with B vitamins, which include folic acid.
Interesting. I supplement B12. Folid acid I get in abundance, as I follow a low-fat, high carbohydrate, plant-based vegan diet. I have been following such a diet for around half a year, and my potassium has somewhat increased during that time.
Also interestingly snd perhaps more importantly, we talk a lot on here about Magnesium Deficiency, which I try and correct with Epsom Salt baths. It is rife amongst us and this article talks about how being Magnesium deficient can stop us from retaining potassium, exacerbating Hypokalemia !
Thanks for the paper – that IS very relevant indeed! I have started supplementing magnesium in the last few months. Maybe that was the missing link to correct my hypokalemia, and I just have to keep doing this.
As my diet is sufficiently high in both magnesium and potassium, I suspect that I might be absorbing less efficiently these (and maybe other) nutrients, and/or excreting them in larger quantities via sweating and urination. Since I do not sweat much MUCH more than other people, and some initial urine tests seem to suggest that I do not excrete a lot of potassium (though more detailed tests need to be done), my current suspicion is that I have malabsorption problems. This would be consistent with the fact that, despite eating enough calories, I am very slim, and this was the case during all my life.
Thanks for making me think more about this!
EDS is short for Ehler-Danlos syndrome, which is the main topic behind this forum, I believe. : )
I am not a medical professional, nor do I know much about antihistamines, as I do not need them, so I cannot give you much advice. I do know that some people with Mast Cell Disorder respond only to specific antihistamines.
Do you have Ehler-Danlos syndrome? The creator of this forum is Dr Diana, and she might be helpful with your problem. Here’s one of her videos: https://www.youtube.com/watch?v=096JbcWLW5c .
Best wishes!
Hello. : )
While I have not been tested for dysautonomia just yet, I do share some similarities with you. As you, my symptoms are typically not triggered with a change in positions (although this can happen, but typically an the end of a day), but are either present constantly, or are triggered by: eating large meals/specific foods (e.g. a large amount of orange juice), moving for too long, increased humidity, and amount/type of light I am expose to (sunlight seems to be worse than most artificial lights). These are the triggers. Some of the symptoms are: brain fog (pretty much constant), dizziness (caused mostly by eating too much fruit), fatigue (constant, and increased with exposure to the sunlight). And there are some other symptoms, such as retrograde ejaculation, that are constant.
So, it is not exactly like your case, but there is some overlap.
While antihistamines do not help me at all, they might help you, as you might be suffering from a mast cell disorder, which is common in EDS, and has an intersection with dysautonomia. For example, you might benefit from checking out this video: https://www.youtube.com/watch?v=Owtt8NO7ahU .
Hope that helps!
An update: I have tried methylcobalamin form of B12, and I have tried it via a transdermal patch. The dose was 500 micrograms. It seems the acne side-effect is still present – there are less acne this time, but they have still formed. In fact, a HUGE inflamed acne formed below my eye (which is a very weird position).
What is interesting is that, since this was B12 absorbed directly into my blood, it indicates that my digestive system is not to be blamed for acne caused by B12 – it seems it is purely B12, and it seems the type of B12 is not very relevant.
Also, the acne that form are unusual. They more feel like elongated hard lumps well below the skin. The skin above them is red and inflamed.
I will switch do daily dose of 10 micrograms. That’s my only hope.
Thanks for the reply. ^^
It could be the form that is causing it – I was *always* taking cyanocobalamin. The papers I have read, about acne induced by B12 supplementation, did not mention that methylcobalamin might be less acne promoting. That said, it seems to be ill-researched. Thanks for the advice! I shall try, and post here how it goes. 🙂
To my knowledge, Dr Alan Hakim might be of help: http://www.thehypermobilityunit.org.uk/index.php/dr-alan-hakim . He is a private rheumatologist specialized in Ehler-Danlos syndrome. I’ve seen him, and he was extremely nice, and open to trying (reasonable) things out.
Hello,
Have you been diagnosed with Ehler-Danlos syndrome?
Did you have any hypertensive episodes PRIOR to starting the Ritalin treatment?
Can you describe in a greater detail the “pressure sensations” in the head – is it more on the back of the head, or more in the face? Do you experience any facial flushing?
You have mentioned that there is a significant variation in your blood pressure occasionally. Have you made sure you measure your blood pressure multiple times during the a day, and do it consistently?
Finally, while I do not have the same experiences, I have noticed that if I consume a stimulant (say, Modafinil), and experience any pressures in the head/chest, L-THEANINE seems to cancel it. As it is easy to buy, maybe give it a go – it might help reduce the symptoms, while you are searching for a better option. (For example: http://www.amazon.com/Doctors-Best-Suntheanine-L-Theanine-Vegetable/dp/B001OXTGVG .)
