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Why doesn't my body tolerate caffeine anymore?


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I have asked this a long time ago and asked around. Nobody seems to have the same issue as me. I was diagnosed with hyper pots. My adrenal glands also don't make enough renin or aldosterone. I think that's where those comes from.

Even when I first got really really sick, I could tolerate caffeine. Now even a few sips of a coke now shoots up my blood pressure and causes bad anxiety to where I'm shaking.

I'm wondering if a particular medicine is causing this in combination with the hyper pots of course. I take coreg, fludrocortisone, klonopin. 

Strangely enough, I can eat chocolate that naturally has caffeine with no issues.

Any ideas on what could be happening? I suspect it's either coreg or the klonopin in combination with hyper pots. I really need caffeine in my life. Maybe it's something else? What do you guys think?

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Hello @Derek1987 - haven't heard from you in a while! - Caffeine is a nervous system stimulant, so it can trigger HPOTS symptoms. Strangely this does not occur in everyone, since I also have HPOTS but do just fine with one or two cups of coffee a day. My finding: anything that triggers your symptoms should be avoided. As disappointing as it is - it is necessary. There are many things and activities that I used to love but now have to avoid in order to avoid symptoms to become worse. 

My autonomic specialist prescribed Ritalin for me years ago for the low energy and fatigue. I take it first thing in the morning and it gives me the boost I need. 

Have you discussed the need for a boost from caffeine with your doctor? There may be other meds or supplements that are safe for you to take and get the same effect as you get from caffeine. 

Good to hear from you again, Derek!

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2 hours ago, Pistol said:

Hello @Derek1987 - haven't heard from you in a while! - Caffeine is a nervous system stimulant, so it can trigger HPOTS symptoms. Strangely this does not occur in everyone, since I also have HPOTS but do just fine with one or two cups of coffee a day. My finding: anything that triggers your symptoms should be avoided. As disappointing as it is - it is necessary. There are many things and activities that I used to love but now have to avoid in order to avoid symptoms to become worse. 

My autonomic specialist prescribed Ritalin for me years ago for the low energy and fatigue. I take it first thing in the morning and it gives me the boost I need. 

Have you discussed the need for a boost from caffeine with your doctor? There may be other meds or supplements that are safe for you to take and get the same effect as you get from caffeine. 

Good to hear from you again, Derek!

Hello there. I've brought it to the attention of my specialist but nothing really came of it. She quit late last year. I've been waiting to see a new specialist. I won't see her until the end of August. 

I'm not sure if I could be prescribed a stimulant and klonopin at the same time. I need something though. The klonopin comes from a psychiatrist. My anxiety was really bad then I discovered I had hyper pots a few months later. I just have a feeling that the klonopin is somehow causing the issues with caffeine. I'm going to try and get off of it. I had no idea that benzos were this hard to get off of. I don't want to be enslaved to this type of medicine anyway. 

 

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I have a low tolerance for caffeine and this got worse when I developed significant POTS symptoms 20 years ago.  I think this is not unusual, as it does stimulate the nervous system.  For me, even small amounts can affect my ability to sleep.  I can also develop a feeling of nervousness.  And it can cause more heart palpitations, for me.  

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29 minutes ago, MomtoGiuliana said:

I have a low tolerance for caffeine and this got worse when I developed significant POTS symptoms 20 years ago.  I think this is not unusual, as it does stimulate the nervous system.  For me, even small amounts can affect my ability to sleep.  I can also develop a feeling of nervousness.  And it can cause more heart palpitations, for me.  

Bummer. Yes my chest gets tight and my heart will jump and flutter or whatever. I forgot about that actually. I need something for energy sooooo bad. When I've trial tested drinking on a coke every so often, my anxiety would increase really bad. I would take the klonopin to reverse it. The strange thing is the klonopin would be like a dose on steroids as if I doubled the dose or something and I'd have to sleep. Weird. 

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For the anxiety you might want to ask about a SSRI.  Getting off the benzo may make things worse for awhile. I have anxiety as one of my primary symptoms so know how bad it is. I avoid all stimulants as they make me worse. Wellbutrin might be an option for the energy boost.  Supplement-wise you can research Guarana it is like caffeine but acts different in the body. I have no idea how it would effect you or even me but I took it years ago and it worked well. Have you tried green tea vs a coke? 

You mention you have low aldosterone. How are your cortisol levels/ACTH? Did they do a stim test on you? 

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3 hours ago, MomtoGiuliana said:

I have a low tolerance for caffeine and this got worse when I developed significant POTS symptoms 20 years ago.  I think this is not unusual, as it does stimulate the nervous system.  For me, even small amounts can affect my ability to sleep.  I can also develop a feeling of nervousness.  And it can cause more heart palpitations, for me.  

Well it is normal for caffeine to affect sleep especially in the evening time. Strong coffee for me will spark palpitations and nervousness. Like usual do what works for you. In my case caffeine in moderation helps with my orthostatics (better than any drug i can take i will see a 10 mm hg rise in bp).

I still refuse to go the benzo/ssri route as noted by @Derek1987getting off of these can be an uphill battle. I have seen this discussed many times. 

Best

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I don't have any issues with coffee - in fact, I don't think I could get through the day without a couple of double shot lattes - and don't have any problems with eating chocolate.

However, I don't drink any soft drinks. Christmas two years ago I had a few sips of a coke and almost immediately felt horrid! I was / am in a flare (I've drunk coke before when not in a flare and have not had any problems with it), but that particular time it brought on some sort of surge...thought I was going to faint. It was awful. Haven't tried it again since.

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I wonder if the sugar in the coke is what causes the issues for those who have mentioned soda being a trigger? I have problems with sugar - I essentially get the symptoms you all described for caffeine. I am also sensitive to caffeine and have eliminated coffee, which was makes me sad! I was only drinking half-caf or decaf to begin with, but I miss the smell, taste, and ritual of drinking coffee in the morning.

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I stopped drinking caffeine drinks years ago as I was getting very jittery and sick. Of course I realised why when years later I was diagnosed with AD and POTS. The caffeine is a stimulant and makes nerves buzz! 

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12 hours ago, JennKay said:

I wonder if the sugar in the coke is what causes the issues for those who have mentioned soda being a trigger? I have problems with sugar

Might be onto something with the sugar. I avoid it and it is not by any medical test it is just by me avoiding what makes me feel bad. Might be a reason that i avoid some of the electrolyte drinks/mixes besides the citric acid because they are high in sugar as well.

Last week i was at the dentist's office and they have a show me board as to various products that contain sugar and it demonstrates how much sugar is in them (visually in a plastic baggy) Coke/Mt Dew and Gatorade had a lot. Zero Water had none.  

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On 8/4/2022 at 11:12 PM, JennKay said:

I wonder if the sugar in the coke is what causes the issues for those who have mentioned soda being a trigger?

Sugar is a carb and carbs can worsen POTS symptoms. Think kids after eating too much candy ...

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Just commenting on the soda/sugar connection. For me, sugar hasn't had any negative side effects. I can drink rootbeer with no caffeine and have no issues. But I do get the same anxiety and high blood pressure if I take medication with caffeine such as a BC powder. I've been eating chocolate candy to try and survive life. But I've stopped because it's definitely causing weight gain. I just don't know what else to do. 

I've even tried decaf coffee. Again, my blood pressure goes up, chest gets tight, heart palpitations etc. Somehow caffeine in chocolate does not bother me. 

I know my adrenal glands aren't working correctly with low renin and aldosterone. I wonder if there's a connection there and if there's anything I can do about it. 

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22 minutes ago, Derek1987 said:

I know my adrenal glands aren't working correctly with low renin and aldosterone. I wonder if there's a connection there and if there's anything I can do about it

I have Addison's disease. I am on Cortef. Do you need caffeine because of fatigue?  Before I was diagnosed I had horrible fatigue. Once on Cortef that greatly improved.

https://www.goodhormonehealth.com/2014/08/19/your-adrenal-hormones/

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1 hour ago, Derek1987 said:

I know my adrenal glands aren't working correctly with low renin and aldosterone. I wonder if there's a connection there and if there's anything I can do about it. 

Low reinin can be caused by hypertension among other things (being dehydrated is one). Wish you the best of luck!

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On 8/6/2022 at 1:18 PM, DysautonmiaMatt said:

I have Addison's disease. I am on Cortef. Do you need caffeine because of fatigue?  Before I was diagnosed I had horrible fatigue. Once on Cortef that greatly improved.

https://www.goodhormonehealth.com/2014/08/19/your-adrenal-hormones/

Yes I need it for fatigue. I saw an endocrinologist a couple of times. He took bloodwork twice to confirm I was actually low on renin and aldosterone. Basically he had no idea what was wrong with me. He was listing illnesses but saying I do not match them. I guess I was something new to him. He suggested florinef for one of the things I'm low on. I can't remember if it was aldosterone or renin it helps. But florinef did help with lightheadedness. 

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My suggestion is to see a different Endo who can screen you for low cortisol/Addison's. Typical workup that I had done is 8am cortisol levels, ACTH serum, ACTH Stim test (this will tell if adrenals are making enough cortisol when ACTH is injected) and possibly brain MRI. Fludo (for low aldosterone) should help with lightheadedness. Also good to check rest of hormones like testosterone/free testosterone, full thyroid panel etc. I goto a very good Endo and he tests many of my hormones on a regular basis. Your low aldosterone could be due to dysautonomia which the link I posted speaks a little about. If you are in EU check out Hertoghe Clinic. 

https://www.goodhormonehealth.com/2019/01/25/fludrocortisone-replacement-adrenal-insufficiency/

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