Benign inter cranial hypertension? Help!

[spacehoppa]

Hi everyone, Sorry I’ve been away so long. I had been very well up until recently. There’s too much detail to go into, suffice it to say that I am beginning to wonder whether I’ve got benign intercranial hypertension caused by the abx. I’ve been dizzy the past few months and often have a feeling as though there is pressure in my head that shouldn’t be there. (I had a bad virus that caused blocked ears, so for a while I thought it was that.)

I have an appointment with my GP on Wednesday and my final (!) appointment with Dr D (who is retiring) next Monday, so I will be asking them too of course. In the meantime, has anyone here had it? How did it feel and what did you do about it? Did it go away? I’ve stopped the abx for the time being, but am terrified of the flare that will be coming any minute. I have been so well and now I feel shattered and scared and don’t know where to go from here.

Much love to all!

Ruth

[Trudi]

Hi Ruth–
I wish I had advice for you, but I am not familiar with this. I will definitely keep you in my prayers!
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[hopefulmama]

Ruth,

Wow – the timing of your post is incredible.

I’ve just been ordered to stop my AP (at least, stop the doxy) … by my amazing AP doc… due to headaches. From my research I am guessing this is the benign intracranial hypertension you were writing about. (I’m going to see my chiropractor tomorrow though, just in case the headaches turn out to be structural and not medicinal.)

I haven’t spoken with him directly yet but the message said to d/c it immediately and call their office first thing in the morning.

I feel exactly as you do. Terrified of what is coming now, if I have to quit for good.

I’m so sorry to know that you are going through this too – but grateful that someone out there understands this ‘calm before the storm’ feeling of knowing that the doxy has kept my life happy and functional for almost a year now, and realizing that may have suddenly ended.

Sending you my prayers and I will report back on any information I get from my dr this week.

Warmly,
Andrea

[spacehoppa]

I had an awesome breakthrough last might when I lay in bed contemplating the problem. If you google intercranial hypertension you’ll find they say it only happens to women between 20 and 40 and women who are even slightly overweight a at much greater risk. well, I am both of these. It didn’t say it precisely in the wiki article I read, but of course the reason for this would be because of excess oestrogen. Thinking back I have had this problem going back way before the abx, back to when I first came off the pill to try for my first baby. Almost immediately I started getting regular ‘sinus’ headaches in my temples mainly. I also started getting problems with my eyes and one doctor even thought I had cancer of the back of the eye (Papilloedemas perhaps?). I also got this same sensation when I was taking clomid to try for baby number two. the first month I took it Nd my arthritis went in to remission and I had tonnes of energy and felt marvellous, but the second month the doctor asked me to double the dose and I got a bangy head (intercranial hypertension), my heart was doing allsorts of horrible things and my arthritis and energy were much worse! So, too much estrogen is as bad or worse than too little, for me anyway.

Anyhow, I just realised why I got such a bad case of ‘bangy head’ this week, so bad that I had to stop the abx. I caught a stomach flu about two weeks ago and over the last week and a half lost about 10lbs of weight. What happens when you lose weight? All the oestrogen that is stored in the fat cells is realised into your bloodstream, a sudden gush!

And why don’t we feel terrible with bangy head etc whilst oestrogen levels are high during pregnancy? Because those estrogen levels are balanced out by high progesterone. So, I had my Eureka moment in bed last night. I had stopped taking all the abx and my head was still full of pressure and tender to lie on, and frankly, scary. So I leapt out of bed and rubbed some progesterone cream on, that I still had after I used it in pregnancy! And voila, within an hour the symptoms were gone!!

So, that’s a lot of information to take in, but please google it and see that I’m not just rambling like a mad person 😉 .

I may still have problems with the abx, but maybe not. I did have this pressure in head feeling a couple of years back, but it was when I was taking a high estrogen contraceptive, which I subsequently had to stop. I didn’t put two and two together at the the time but I am now. I figure if I supplement with progesterone for the next few days until well into my period, I should be able to try the abx again at a low dose and see from there. God, I hope I can convey this to my GP and rheumy well enough that they leave it in my hands.

I had quite exceptional circumstances this week what with the excessive weightloss, but maybe it’s a blessing, as it might enable me to counter those regular headaches, which might actually be being caused by excess estrogen, rather than too little, as I had previously thought. It seems that I need a ‘goldilocks’ amount of estrogen, not too little, not too much, and now I just need to figure out how to keep it that way. Also, my progesterone levels are always on the floor, and postmenopausal whenever they are measured, so maybe I just need to supplement regularly anyway.

sorry this is so long, but it feels really important to write it all out so I don’t forget and for anyone else who may be having this problem.

Hopefulmama – Is it possible you have whacky hormones too? Too much estrogen maybe or too little progesterone? Could be someone to look into before you give up he abx!

[hopefulmama]

Ruth,

That is fascinating and I will have to speak with my AP rheumie about it. Thank you so much for sharing your revelation.

It is true that my progesterone is almost 0, postmenopausal. The estrogen is thus definitely out of balance.

However, my weight situation is different. I am (and have been for two years) grossly underweight. I am 5 foot 6 and weigh about 110 lbs at best. When I’m really lucky it goes up to 114. I eat thousands of calories a day and I can’t keep the weight on. The slightest stress and I lose it all.

I am hesitant to begin supplementing with progesterone again. Not only did it make me feel very nauseated while I was using the cream, I actually met an OB-GYN at soccer practice for my son’s team the other day who confided in the group of mommies (she was a mommy too) that when it comes to hormone supplementation she sees cancers (especially uterine) in those who have been supplementing with progesterone cream. She says the research is now showing that supplementing with estrogen alone is not harmful, but the progesterone is not as safe as Dr. Lee and others have purported it to be.

For now, I’m going to wait and speak with Dr. F’s office – and my LLMD – about this development and see what their recommendations are. As always, I’ll keep researching too and see if I can dig up more information about the hormone connection. I’ll keep you posted, and definitely let me know how it goes with the progesterone cream! I wish you the very best and thank you so much for responding to my post 🙂

A

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