Using Diuretics For Intracranial Hypertension

[RA Winters]

It has been really good to read about EDS and IH. I don't know anyone who has IH headaches and it has been a relief to come here and read about different treatments and so forth. The Intracranial Hypertension Research Organization has recommended diuretics as a possible solution too. I just went through 72 hours of back to back IH headaches but took the diuretic my doc supplied. I combined it with Tumeric since many people have had success with it helping with IH. The combined treatment reduced my pain and symptoms by about 60% at the least and 85% at it's max throughout the ordeal.

True, that as CFIDS patients we often have reduced blood volume, but my doctor's solution was to take the diuretic only on IH days or days when I felt like they were coming on. Usually, I am either super thirsty or retaining water with that special pressure behind my eyes when one is coming on and am also much more prone to them during my period or the week before that. We are experimenting with diuretics as CFIDS and it's allergy prone self made this last diuretic a poor choice from a sensitivity standpoint (although it technically did it's job). By the way, before the diuretic, I took only Tumeric and it does help. The diuretic alone helps too. But together they are more successful, and the Tumeric can be taken all the time which is my next course of action.

While taking the diuretic, I also made sure to wear pressure stockings for circulation and to keep my legs slightly elevated when sitting or laying down which is most of the time. I do salt but only with iodized salts or natural salts from the Himalayas. I take kelp for iodine too. Normally, I am a very hydrated person, so learning to go a little on the dehydrated side (not extreme) is a new experience. Does anyone have anyone solutions?

 

[MishMash]

It has been really good to read about EDS and IH. I don't know anyone who has IH headaches and it has been a relief to come here and read about different treatments and so forth. The Intracranial Hypertension Research Organization has recommended diuretics as a possible solution too. I just went through 72 hours of back to back IH headaches but took the diuretic my doc supplied. I combined it with Tumeric since many people have had success with it helping with IH. The combined treatment reduced my pain and symptoms by about 60% at the least and 85% at it's max throughout the ordeal.

True, that as CFIDS patients we often have reduced blood volume, but my doctor's solution was to take the diuretic only on IH days or days when I felt like they were coming on. Usually, I am either super thirsty or retaining water with that special pressure behind my eyes when one is coming on and am also much more prone to them during my period or the week before that. We are experimenting with diuretics as CFIDS and it's allergy prone self made this last diuretic a poor choice from a sensitivity standpoint (although it technically did it's job). By the way, before the diuretic, I took only Tumeric and it does help. The diuretic alone helps too. But together they are more successful, and the Tumeric can be taken all the time which is my next course of action.

While taking the diuretic, I also made sure to wear pressure stockings for circulation and to keep my legs slightly elevated when sitting or laying down which is most of the time. I do salt but only with iodized salts or natural salts from the Himalayas. I take kelp for iodine too. Normally, I am a very hydrated person, so learning to go a little on the dehydrated side (not extreme) is a new experience. Does anyone have anyone solutions?

RA,
Is IH your only problem? Do you have other CFS symptoms (fatigue, exercise malaise, flu-like sickness, etc). Do you have reactivated viruses? If it is only IH you are suffering from you might have found your cure.

Also, how do you take the turmeric? Straight from the spice bottle? In capsules?
Thanks.

 

[Seven7]

Hmmm I get pressure in my brain no idea why or what it is, also burning in spine and brain but I have OI or POTS like symptoms so I was told to increase liquids so I load on salt and electrolytes. I wonder if when I get the pressure I can try that!!!

 

[RA Winters]

RA,
Is IH your only problem? Do you have other CFS symptoms (fatigue, exercise malaise, flu-like sickness, etc). Do you have reactivated viruses? If it is only IH you are suffering from you might have found your cure.

Also, how do you take the turmeric? Straight from the spice bottle? In capsules?
Thanks.

Hey everyone - I take the tumeric in capsules nature made brand which is much cheaper than eating the spice from the grocery store. I only take the diuretic during times of IH imbalance which of course we can feel. I take tumeric everyday not just during the IH times and take extra tumeric if I'm having IH. Use pressure stockings, elevation and massage with good liquid intake/salt and electrolytes the rest of the time.

Yes I am a CFIDS patient too. I have neuro symptoms (cognitive dysfunction,vertigo,tremor in head and hands,stumbling/falling, migraine, IH headaches, muscle spasms), endocrine (hormonal imbalance and early entry into perimenopause), metabolic (extreme fatigue,problems with digestion, thermo-regulation dysfunction), Immuno (immunosuppression, viral reactivation, autoimmune-like activity, low-grade fever, swollen lymph nodes, sore throat), circulatory (poor circulation, exercise malaise, dizziness when upright and standing especially), as well as vision problems, allergic reactions to medications/substances and severe body-wide pain. Probably sounds familiar right?

CFIDS patients die from these top three respective causes; suicide, secondary infections and cancer (especially lymphoma). I was on my deathbed last fall because of back-to-back secondary infections. Over a period of two months I was getting weaker and weaker until my husband was having to help me dress/eat and move from bed to futon. I was often "out of it" and my color was very grey/sunken looking. There are no CFS doctors here in Colorado so everything my husband and I have accomplished has been through our own research and his observation. He was the one that noticed that I had "flare-ups" often in conjunction with some infection that my children (we have 4) or him were suffering from.

1. Changed my diet to GF/DF with low acid/stimulant/fungi-algae intake and lightly cooked veggies instead of raw for digestive absorption and removal of natural plant toxins. I take probiotics and avoid high sugar/yeast foods. Good supplements Co-Q10, Vitamin D, Multi-vitamin, Calcium, Potassium, L-Lysine, Kelp (only Nature's Way the other brands have high mercury levels and are not the right species of kelp).
2. Exercise was eliminated because of PEM except for up to two recumbent sessions a week doing a small number of reps of arms raises, stomach tightening, and alternating legs to a bent then flat position and occasional stretching.
3. Eliminated all medications (except thyroid meds) for 8 months and then gradually added in meds until we had found compatible medications that were non-stressing on my body. My doc always prescribes new meds in the smallest dose possible. I also learned how and when to take my meds to avoid medication interactions. I have Amitriptyline, hydrocodone/Acetaminophen 5-325 Tab, Cyclobenzaprine (muscle relaxer).
4. Lifestyle pacing and contemplative relaxation.
5. Lymph-node massage/emptying and Detoxing herbs/baths

In spite of these changes I did digress, as I mentioned above, and that is when we learned about reactivated viral activity and secondary infections. I actually studied AIDS for awhile and thought "that looks a lot like me" even though I tested negative for AIDS. I told my telecare nurse what was happening and about my husband noticing flare-ups in conjunction with infections and how that was like AIDS. She then tracked my progress and when she saw I was going downhill rapidly she told me to get into the doctor immediately and get on antiviral agents and antibiotics as needed. They stabilized me through, 1 course of antibiotics, 1 course of Prednisone, daily Acyclovir (I take 1g four times per day) and daily Colcrys (a Rituximab like agent). The body-wide pain is much more manageable and my cognition is better and the weakness has been greatly reduced. The original dose of Acyclovir was 500mg two times per day for six months. When I tolerated it well, they went to the mega-doses. Between Colcrys and Acyclovir they are hoping to drive the active virus HRV-1 into dormancy. The Colcrys is a chemo-therapy autoimmune agent. I will be on the meds for a year and we will retest. I also came back positive for Parvo and Cytomegalovirus in my system although they are inactive at this time.

5. Antivirals, serial testing for viral agents as needed.
6. Prednisone or other steroid (one course as tolerated)
7. Colcrys for autoimmune activity (took one and a half months to see improvement).
8. Diuretic for IH

My profile pic is from when I was healthy. I hope to be healthy again. They estimate currently that 5-10% of CFIDS patients recover. I am accepting of today but hopeful for tomorrow.

 

[RA Winters]

Hmmm I get pressure in my brain no idea why or what it is, also burning in spine and brain but I have OI or POTS like symptoms so I was told to increase liquids so I load on salt and electrolytes. I wonder if when I get the pressure I can try that!!!

I only use the diuretics during IH and I increase my tumeric intake. Then the rest of the time I do the hydration/salt/electrolyte thing too and take tumeric daily.

 

[MishMash]

I only use the diuretics during IH and I increase my tumeric intake. Then the rest of the time I do the hydration/salt/electrolyte thing too and take tumeric daily.

RA,
Do you have an personal theories as to why your body would want to increase its brain pressure, then decrease it later on? I ask because you seem extremely well-educated about this illness. I absolutely believe you, but it does sound so confusing. On the one hand, we need extra fluids and salt for OI, and on the other hand we need to decrease hydration to brain to keep it from getting crushed.

Have you had an MRI to see if you have a normal pituitary gland? Sometimes they can get crushed (Empty Sella Syndrome) by the heightened brain fluid pressure. It is quite common in CFS patients. Makes me wonder what other hormonal imbalances it is causing in your body?

 

[RA Winters]

They said my MRI showed an "atrophied" brain but I do not have empty sella syndrome which would certainly cause many other systemic problems. I believe that the fluctuations of retention of spinal fluid is due to "flabby" ducts whose job it is to empty the brain/spinal fluid according to pressure. Hormones can make muscular and connective tissues either very flacid or tense neither of which is good for their normal function. Most men do not realize that like women they have their own hormonal fluctuations during the month. A doctor that is a proponent of a "healing diet" that I follow mentioned that hormonal imbalances in men and women alike are becoming more common due to depleted soils and therefore poor nutrition. In addition, many CFIDS patient's suffer with IBS or constipation both of which cause poor processing of nutrients from foods and which contribute to copious yeast infections. Yeasts eat probiotics. You can only get rid of yeast with daily or weekly probiotic capsules. Probiotics produce a huge percentage of our usable nutrients as well as helping our immune systems. Additionally, our diets in America are heavy in plant materials and starches which are high copper items. The counterbalance to copper is zinc. All meats have zinc. Zinc is particularly necessary for men's production of testosterone and proper balancing of estrogens/progesterone.

Per the healing diet and lifestyle, I get the highest concentration of zinc from a couple servings of smoked canned sardines a week. I also eat veggies that are always lightly cooked (rarely raw) so that they are easier to process for proper digestion while removing toxins. Mapping hormonal fluctuations for myself was as easy as jotting down dates when I felt more emotional, confused or tired especially if they came with occurences of IH. Count the days in between occurences and you might see a pattern develop. Men often report anger fluctuations, feeling antisocial or feeling an anxiety or urgency about life. Another helpful thing for some people is guarding your diet against pesticides, preservatives, artificial food colorings/flavorings/additives. All those labels that state things like BHT, Red No. 5, Vanillian or even just artificial anything should be avoided especially if you get IH. All those flavoring and coloring items are actually made from petroleum so we are in essence eating gas. This triggers countless allergy signals in the body.

So, for example an easy meal for me will be a big bowl of frozen veggies that have been steamed in the micro with only iodized salt and pepper and olive oil. Frozen veggies are preserved closer to being picked and are actually healthier than fresh which have been away from the soil longer. With that I'll have a turkey patty (frozen/thawed/cooked with no preservatives) and some bread or other starch. Rudi's and Udi's brands of gluten free bread are also dairy free, soy free, egg free and very nutritive. King arthur gluten free flours are excellent for cooking with and they have a lot of gluten free recipes online that are great. Replace "guar gum" in gluten free recipes with powdered plain gelatin (much cheaper). Glutino brand gluten free foods (cookies, crackers, pretzels) are packaged in nice big packages. My walmart carries those items very cheaply. I know all to well (since I have a family of six to feed on a disability budget) that organic and "natural" foods are more expensive. However, if you stay on them for more than three months you'll begin to notice that you are not needing as large of portions as before, as the healthier items are also more densely nutritive. For instance, my kids will eat two to three mass-produced eggs a piece in one sitting and only will need one organic range fed egg a piece for the same meal. I tend to only cook two to three times a week and eat off that for the days in between. My husband is also disabled (he has a broken back) so the key is to really simplify. If you can't make your entire meal in 15 min. It is too complicated. There are even reasonably priced frozen micro dinners that have no preservatives, artificial colorings or flavorings and great veggie filled natural recipe canned soups that are also low sodium. Make a huge crockpot of soup, beans or stew and put the rest in freezer containers for really bad days.

One last note, not all sodiums are created equal. Sodiums which are non-iodized and not from natural salts are not generally good for the body (the sodiums in most processed foods). Natural salts always contain more necessary trace nutrients and minerals as well as iodine.

All the little changes that I have made over time have truly contributed to a better quality of life. I am sick, but I can either be sick and miserable and getting worse or I can be sick but managing my life well. Make changes to your life one at a time and give them three months to make a difference. Here is the web link for the healthy lifestyle plan:

http://drlwilson.com/

 

[xchocoholic]

Hi ra,

We're on a similiar path healthwise but I found I need to avoid more foods than you.

I'm interested in which diuretic you're taking and how you decided which one was best. I've just started
experimenting with this myself. I have angioedema and thought it might help. tx .. X

 

[SickOfSickness]

RA,
Do you have an personal theories as to why your body would want to increase its brain pressure, then decrease it later on? I ask because you seem extremely well-educated about this illness. I absolutely believe you, but it does sound so confusing. On the one hand, we need extra fluids and salt for OI, and on the other hand we need to decrease hydration to brain to keep it from getting crushed.

@MishMash this wasn't addressed to me, but I'd like to discuss IIH, OI, MCAD, and treatments privately if you will.

 

[Gingergrrl]

@RA Winters @MishMash I just discovered this thread and not sure if either of you are still on PR.

I believe I had the increased inter cranial pressure and headache from IV saline but think (hope?) that it reversed itself on its own. I am continuing to try to increase fluids & salt and was not told to take an anti diuretic although this makes sense.

I'm not even sure if I have a specific question, just hoping to keep this thread revived so I can hear more feedback.

ETA: I do have a question and was wondering if there is a blood test (or something other than an MRI) which can show increased inter-cranial fluid or pressure?