Headaches and intracranial pressure

[Gingergrrl]

Although I've had headaches in the past when I used to take Florinef and some other meds, I have recently been having them close to every single day.

These headaches started after I had an IV saline treatment on 11/6 which ended in me being rushed to the ER with what we think was flash pulmonary edema and possibly cerebral edema. I've posted a lot about it (and don't want to bore everyone!) but the headaches are concerning me.

Initially the headaches included pressure behind my right eye but that has gone away. Now the headaches, besides the pain itself, feel like pressure in my entire head as if my head and ears are full of cotton or the way you feel on an airplane.

I talked to my doctors and they don't think it is connected to the saline since so much time as passed (and I am not saying they are wrong) and just trying to figure it out. I am wondering if the saline slightly injured my brain and it is slow to recover?

I also read a link that someone sent me to Cort Johnson's blog which said that many PWC's have increased inter-cranial pressure. If that is the case, then it seems like others would have had this horrible reaction to saline besides me.

My doctor said I could do an MRI of my brain to assess the headaches but to check inter-cranial pressure, I would need a spinal tap which I really do NOT want!!! I am hoping they will just go away on their own. Plus it would not make sense for me to take a diuretic when I have low blood volume!

I do not ever have high BP and even lying flat, my BP remains very low so this is not any part of the issue.

Has anyone else had this?

 

[Revel]

@Gingergrrl, not sure if you saw my post, but I wrote in another thread the other day about being sent for a CT scan after my migraine/intense head pressure had gone on for a week without any sign of improvement.

I was also offered a spinal tap. I refused as I have had a lot of spinal surgery in the past (fusion, bone grafts, metal rod inserts) and I didn't want them tinkering about back there.

Although I had a history of migraines, this one was quite different. I was hospitalised until it subsided, partly because I had become dehydrated, but also they were quite insistent about the spinal tap - I told them that I'd have it done if they thought it was a matter of life and death, it didn't get done, so I guess it wasn't .

l have had similar episodes since, but not the same intensity or duration.

Sorry I can't help with an explanation or possible treatments. I hope you get some relief soon.

 

[NK17]

I suffer from ME headaches, they used to be more incapacitating when I was younger.

In '11 I had a LP (lumbar puncture) to look for pathogens and rule out MS and my intracranial pressure reading came up mildly elevated.
My ME doctor (Dr. Kogelnik of the OMI) confirmed that an elevated intracranial pressure is quite a common finding in PWME.

I also had an extensive neurological work up in '12 which comprised of brain MRI, CT scan, trans cranial doppler and 2 echocardiograms with bubble studies for PFO. Apart from the classic ME brain MRI findings, everything was negative.

I hope the headaches you're suffering from will abate soon.

 

[Gingergrrl]

@Revel and @NK17 I am so sorry for all that you have been through and the headaches are relatively new for me. I didn't realize until recently that increased intracranial pressure was so common in ME/CFS. I feel like the IV saline experience was the tipping point for me and hoping that my brain will somehow heal and this will not remain permanent.

I am also thinking that one of my new supplements/treatments might be contributing to these headaches and I am going to be trying a different version of it (as soon as it arrives in the mail!) to see if this makes a difference.

It sounds like doing a spinal tap really wouldn't add any helpful info to the equation and even if someone has slightly elevated intracranial pressure, they don't really do anything for it.

BTW, is it called inter or intra cranial pressure? I think I may need to change the title of my thread to use the right term!

 

[SickOfSickness]

Intracranial.

An LP is sometimes completely wrong, as in it will show a low or normal number when you have high intracranial pressure, and I believe the opposite happens too. I wouldn't be able to explain all the possible reasons why, but that's another big reason to not get one done.

 

[Gingergrrl]

Intracranial.

An LP is sometimes completely wrong, as in it will show a low or normal number when you have high intracranial pressure, and I believe the opposite happens too. I wouldn't be able to explain all the possible reasons why, but that's another big reason to not get one done.

Thanks, that's what I thought and just changed the thread title!

I did not know that a lumbar puncture could give incorrect results and that is good to know. I read about all kinds of horrible things that could go wrong with the procedure (aside from it being dangerous and really painful) and was never planning to do one.

I guess I was just wondering if there is any other way to assess headaches or measure intracranial pressure but it sounds like there isn't.

 

[NK17]

Thanks, that's what I thought and just changed the thread title!

I did not know that a lumbar puncture could give incorrect results and that is good to know. I read about all kinds of horrible things that could go wrong with the procedure (aside from it being dangerous and really painful) and was never planning to do one.

I guess I was just wondering if there is any other way to assess headaches or measure intracranial pressure but it sounds like there isn't.

Just wanted to add that I did not have a LP to have the intracranial pressure reading, that is a measurement which is routinely taken while they collect the CSF cerebro spinal fluid for other tests.

In my case MS was suspected and at the same time I wanted Dr. Kogelnik to add my sample to the OMI's bio-bank.

I had it done at El Camino Community Hospital next to Dr. Kogelnik's clinic. All in all the procedure in itself was a walk in the park for me. What was very difficult and painful was the fact that I flew back home the same day and therefore did not lay down for 48 hrs straight after the LP.

Because of that I suffered some of my worst headaches for several days and wondered why nobody warned me about the post LP protocol.

If you ever need to have a LP done, be advised to lay down horizontally for the first 48 hrs, drink plenty of liquids and don't engage in any activity what so ever!

I know that Dr. Peterson frequently does LPs on his ME patients, he performs the procedure himself at his clinic and keeps some of the CSF (cerebro spinal fluid) for his bio-bank for research too.

 

[Martial]

Could it possibly be sinusitis headaches? Obviously you are mentioning some other types and some very serious, however maybe something worth looking into.

 

[taniaaust1]

Initially the headaches included pressure behind my right eye but that has gone away. Now the headaches, besides the pain itself, feel like pressure in my entire head as if my head and ears are full of cotton or the way you feel on an airplane.

I had the headaches, exactly what you are describing (behind the eyes and also the cotton wool ones which also affect ears) in my early ME years.

I hadnt had any meds at that point and hadnt had saline IV, this kind of headaches for me was purely due to the ME. From my own experience, these ME headaches can change from behind the eye pressure pain, to actual within the eye pain so ones very eye balls hurt and feel like are going to explode. ME really teaches one about all the various kinds of headaches one can get!

Nowdays thou I get frontal headaches mostly or more occassional to one side. The frontal headaches thou can shift to all over headache for me.

I really wonder what each kind of ME headache was caused by. What was different in the body to have a ME stage in which one kind or another kind was present?

 

[Gingergrrl]

Thanks to everyone for all the feedback and I am confused (in case anyone knows?) is cerebral edema and increased intracranial pressure the same thing or two different things?

I literally cannot figure out the cause of these headaches. It is possible they are just part of my overall ME/CFS, but they started with my second saline infusion and then the third one was disastrous where I ended up in the ER. After that, I had headaches about 50% of the time.

Now they are much more frequent but I also started doing magnesium by nebulizer (Dr. Sarah Myhill protocol) and using Magnesium sulphate and I think the sulphate may be giving me headaches. The nebulizer is a great treatment and has really helped my shortness of breath and eliminated my chest pain and "angina" type symptoms. But I notice that I can get a headache afterwards that can last up to 24 hours. But the headaches are now so frequent I am not certain it is from the sulphate in the Mag (b/c I can get them on the days that I do not use the nebulizer.)

In any case, I ordered Mag chloride to try with the nebulizer but it doesn't arrive until Tues. Once I make that switch, if the headaches are gone, then I know it was (at least partially) from the sulphate. But I truly believe the saline incident did something within my brain to contribute to these headaches. I am just not sure what an MRI would show (and definitely do not want a spinal tap!)

I have never had migraines, and I know some of you guys have suffered life-long with migraines, so I apologize to be complaining so much about the headaches which are relatively new for me. I just don't want them to become a constant daily thing where I have to take painkillers.

The other weird thing is that my BP is all over the place today. When I woke up it was 106/75 which is the dream blood pressure I have been trying to attain with Midodrine but two hours after the Midodrine it was only 88/62 which is so strange. I've been really shakey since last night with muscle pain so I am taking extra salt stick tablets and drinking Pedialyte.

Sorry that this is so rambling all over the place, I am just frustrated that I can't get better and when I have a brief period of feeling better, it never lasts .

 

[SickOfSickness]

I heard there were non invasive ways to check intracranial pressure but that doctors do not use them.

Florinef causing more headaches is consistent with having too high intracranial pressure. Florinef increases intracranial pressure.

I'm not sure if saline can increase intracranial pressure. It seems like they use a 10% saline to DECREASE intracranial pressure.

High pressure headaches and low pressure headaches are very similar. Or maybe your headaches are not related to intracranial pressure at all.

If you have really understanding doctors you could try to get an MRV to check for CCSVI, get a CineMRI or fMRI but I would try the mag chloride and some other easy things first.

Look up migraine triggers and see if you are doing those.

 

[Gingergrrl]

@SickOfSickness

Florinef causing more headaches is consistent with having too high intracranial pressure. Florinef increases intracranial pressure.

That's what I suspected and Florinef always gave me headaches and made me feel sicker but I stopped it at the end of Sept so can't be part of what's going on now.

I'm not sure if saline can increase intracranial pressure. It seems like they use a 10% saline to DECREASE intracranial pressure.

I'm not really sure about this just b/c I lack the knowledge and background.

High pressure headaches and low pressure headaches are very similar. Or maybe your headaches are not related to intracranial pressure at all.

What I had right after the saline was a high pressure headache (from what I read) w/pressure behind my right eye but that part is gone. The headaches now are like my entire head is full of pressure or full of cotton including my ears.

If you have really understanding doctors you could try to get an MRV to check for CCSVI, get a CineMRI or fMRI but I would try the mag chloride and some other easy things first.

I don't know what any of those are but will google them. But I am at the point of not wanting any more tests for anything b/c they never seem to show anything or help! And I am definitely hoping that switching to the other Magnesium will be the solution!

 

[jimells]

Like many PWME, I'm very sensitive to medications. I have found that whenever I have a new pattern of headaches, some medication is the cause. It can even be medication that I've taken for many months without a problem.

Recently I started experiencing HAs every morning and I immediately suspected the Florinef was once again the cause. Since I am already down to just 1/2 tablet per day, I cut the pill into quarters and take 1/4 in the AM and 1/4 in the afternoon. That seems to be working, for the moment...