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Horrible Headaches from Drinking Water


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Hello again-

    As you all know, when you are diagnosed with POTS, your doctor tells you to do salt and fluid loading, but especially the fluids. I did the fluids for 4 months, drinking 96-120 ounces of water a day as directed by my doctor. I noticed in those four months that I got more frequent and severe migraine attacks. When I started drinking less water, I didn't get as many bad headache attacks. Now I barely drink any water at all, which I know isn't healthy, but it is what it is. I was wondering why this was happening? Most POTS patients feel better when they drink more water. Does anyone know why this happens? I tried to ask my doctor about intracranial hypertension but she brushed it off saying that a lumbar puncture would be too invasive. I get horrible headaches that feels like my head is about to explode. Also, whenever I bend over, I can barely breathe because of the pressure in the front of my head. When my BP goes up (like after exercise) I always can feel the pressure in my head and my pulse in my head. I also have tinnitus all the time. I don't know what to do anymore. No doctor seems to care any more. Any advice?

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@Knellie, I don't get migraines, but I did find that although increasing my water & salt intake helped my fatigue for a few days, after that the same amount seemed to give me a fairly bad headache/pressure feeling and did not help with the fatigue any more.

I stopped the fluid & salt loading and the headaches went away. (The same thing happened when I tried abdominal compression.)

I did also read a post on this board from someone who got headaches from having IV fluids.

Four months seems like a good long trial to me. You gave it a good shot but it didn't work for you.

One problem with a POTS diagnosis is that POTS is a syndrome – meaning a constellation of symptoms that tend to occur together in patients. But no-one knows if all the people with those symptoms are suffering from the same underlying cause. It's a bit like being diagnosed with a fever. It gives you some useful information and can point to treatments, but it doesn't pinpoint the cause, it just points the doctor towards "maybe there's an infection".

Doctors have trouble understanding syndromes too. They might think "extra fluid is a treatment for POTS", but that's not proven, just a trend. It's not the same one-to-one idea as "penicillin is a treatment for strep throat". If a patient had strep throat and wasn't improving on antibiotics, the doctor should question the diagnosis. But if a patient with POTS doesn't improve on extra fluids, that doesn't necessarily mean the diagnosis is wrong, because POTS is a syndrome.

I have read a couple of really good articles on the meaning (and lack of meaning) of the term "syndrome" in medicine, but of course can't find one now. Anyway, hope I conveyed the drift.

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@Sarah Tee a syndrome is a group of symptoms that occur together and don;t otherwise have a name. POTS is a group of symptoms that mostly shares postural orthostatic tachycardia but has many other symptoms that do not necessarily occur in all patients with that syndrome. 

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@Knellie, here is an article, rather long, but the author states that fluid loading did not work for her and she is being treated at Vanderbilt.

https://wpde.com/news/local/the-article-i-wish-id-had-diagnosed-with-pots-and-still-anchoring-the-news

 

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@Knellie I had a very similar experience from fluid/salt loading. When I initially started fluid/salt loading, the head pressure was not so bad. However,  when I increased both fluid and salt even more because I wasn’t noticing any improvements, my head pressure got much worse. When I stopped the fluid/salt loading last year, my head pressure did get a lot better. Unfortunately, even though it has gotten better, the head pressure has still stuck around. It’s like now my head is very sensitive to a number of things. I can’t wear hats anymore without getting terrible head pressure, and even my sleep is a big factor as well. 

I, too, wondered about intracranial hypertension because raising cerebral blood volume causes an increase in cerebral pressure. I mentioned ICP to my neurologist and he brushed it off because I don’t experience any vision problems. I know this doesn’t rule out ICP, but i didn’t press him on it. I have tried a bunch of different migraine medications and none of them have made me any better. Next week, I am going in for a Botox shot to see if this provides any relief. I can’t say I really have any helpful advice, except that I seem to be experiencing something similar to what you are. 

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@Sarah Tee - Thanks so much for the article. I really related to it.

@Zach Martin - My doctor too recommended me doing Botox, but I wanted her to first test me for ICP. I hope Botox works well for you. I was worried about doing it myself because I didn't want it to throw me into a flare. I hope that we both find some answers soon, because it is infuriating to live like this.

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Hi  I would try doing some different experiments.  For example if you were drinking tap water, try bottled water.  Maybe there is something in your water that you are allergic to. A doctor can confirm but I think it is unlikely that drinking water alone would cause headaches.  If you took in too much salt and your blood pressure becomes too high, that definitely causes headaches.  The way to manage this is to buy a home BP monitor and very gradually increase your intake of salt and or water.  For each day measure your HR and BP a few times and also write down how much salt and water you have. When your BP starts to get too high you reduce the salt, instead of allowing it to creep up.  Water washes out the salt, so it is always important to drink water even when your BP is too high.  I also adjust for my menstrual cycle etc since I retain more fluids around that time.   

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Headache is listed as a symptom of overconsumption of water and of too-rapid administration of IV fluids (or too much).

I haven't read that salt & fluid loading as prescribed for dysautonomia/OI can cause headaches, but it doesn't seem like too much of a stretch.

Given that some people find that they get no benefit from water & salt loading, there could be a subset of those people that end up overloaded and get a headache from it.

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When I was drinking the 100-120 ounces of water ( water, sports drinks...) and salt loading like my my doctors said to consume in a day I was getting awful migraines, they finally figured out in my case I was washing all my electrolytes away so I now get more electrolytes in my infusions to help offset the loss from oral drinks.

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