This Is MS Multiple Sclerosis Community: Knowledge & Support

[Lovelace]

Hi, there. I was diagnosed with Idiopathic Intracranial Hypertension last year, meaning that due to an unknown cause, my cerebrospinal fluid pressure is too high. This causes some of the nerves around my brain to be compressed and creates a number of other problems, usually resulting in:

- High pressure headaches (full/achey/pressure kind of feeling, a bit like a sinus headahce)
- Papilledema (swelling of the optic discs, usually leading to visual disturbances and/or vision loss)
- Tinnitus
- Dizzy spells

... and a plethora of other issues that vary from person to person.

Now, what concerns me is that many of my symptoms overlap with those often described by MS patients, but I can't tell for sure because having high intracranial pressure can cause certain problems of its own. Not to mention, my condition itself could be a symptom of a lot of other things (hence, idiopathic.) Once a cause is found, it's not really idiopathic anymore, and it's referred to as Secondary IH. What I worry about is that what I am really suffering from is Secondary IH, and the cause of it is MS or something related.

Here are some of the symptoms I have that seem suspicious to me:

- Fatigue: I'm usually tired. Occasionally I have good days where I can make it, but most of the time I need long naps. The exhaustion usually starts around noon (though sometimes I have it as soon as I wake up) and continues to get worse throughout the afternoon until it's unbearable and I have to take a nap. By mid to late evening, I usually feel physically more awake again, though still sort of mentally drained.

- Odd sensations: I experience sharp stabs of pain (sort of feels like getting a shot) in my cheeks, fingertips, toes, and sometimes thighs. I experience tingling/numbness in my scalp, neck, face, fingertips, and occasionally calves. I experience burning in the top of my breasts, torso, and back. And I experience warm sensations in my inner legs and occasionally heels/ankles. All of this has been getting progressively worse over the past few years (started a few years back with mild fingertip tingling.) Also tends to happen in "episodes" of a few hours to a few days, usually coinciding with my other symptoms. The one thing that gets confusing with this, however, is my medication (Diamox) is known to produce tingling/numbness as a side effect. I began experiencing most of these things before Diamox, though, so I'm assuming that it exacerbates my symptoms.

- Weakness: If I'm tired, I'm usually weak, too. I feel heavy-limbed, and it's like I'm trying to walk through water. My neurologist said my muscle tone and reflexes are fine.

- Dizzy spells/balance issues: Occasionally I have dizzy spells where any movement around me throws me off and makes me feel like I'm going to take a tumble. I also have trouble staying up sometimes. Like, it feels like it takes effort to stand upright. This always coincides with my other symptoms, especially tingling episodes.

- Muscle fasciculations and jerks: I get small twitches all over my body. Occasionally I also shudder involuntarily, only I sort of jump. Usually starts at the base of my neck and causes my shoulders to jump and one or both of my arms to twitch.

- Cognitive problems: I have trouble with my memory a lot. Sometimes I can't recognize things or forget important information that I should have basically engrained into my memory. Also struggle at retaining new information sometimes, and sometimes can't comprehend speech/writing.

Those are the main things. What's weird is they all tend to happen in a pattern, and they seem to happen independently of symptoms caused by high pressure. For instance, my period always causes my ICP to rise, and I can tell because I start having eye pain and seeing sparkles from my papilledema, and sometimes experience pulsatile tinnitus. But a lot of the time, I go through these weird episodes where I'm having all of these weird symptoms at once, and yet there are no other signs that I'm having ICP. Additionally, my papilledema has significantly improved since I started taking Diamox, which means my ICP must be going down. However, most of my other symptoms have not shown improvement at all. I don't experience high pressure headaches or pulsatile tinnitus so much anymore, but all the other stuff is still there.

The tests I've had done include a CT scan, an MRI about a week later, another MRI about a month later, and then a lumbar puncture a month after that. Neurologist has also done basic testing (the finger to nose thing, testing my ability to distinguish the left and right sides of my body, walking in a straight line with one foot in front of the other, reflexes, pushing on my legs to test my muscle strength, etc.) Everything has come back normal. Now, I don't want to self-diagnose. I know there are a lot of things that can cause strange symptoms. But I also know that MS doesn't always test positive the first several times, and I worry because of the nature of my symptoms. Even my neurologist agrees that a lot of my symptoms are atypical of someone with IIH alone. Does it sound like I could have MS? What are your thoughts on this? Thank you for taking the time to read this enormous wall of text, I appreciate any insight or advice you might have. I'm just looking for answers. I don't want to settle for "idiopathic." I want to know what's causing my IH and why all these strange things are happening to me. I'm sick of being left in the dark.

[Anonymoose]

Hi Lovelace,
Do a search for a thread by cece about ccsvi success stories. I think you will find a lot of symptoms similar to yours were relieved. That isn't to say you have ccsvi, it's just to point out that the overlap in your iih symptoms and ms might be because some people with ms have iih (undiagnosed?) as well as ms. Ccsvi PTA is suspected to increase csf drainage in people with venous flow issues.

Good luck in your search for answers.

[Lovelace]

Omg, I didn't even know such a thing existed. That's incredible. It would explain so much, for a lot of IIH sufferers. Thank you, I will continue researching that.

[Anonymoose]

Lovelace,
I don't know at all if ccsvi could be implicated in normal iih but if you are curious about the details, here is a link to a very recent release about the relationship between reduced csf flow and ccsvi. If ccsvi is found to be related to some cases of iih, it might actually help the ms cause move forward.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21783.html
If you decide to investigate ccsvi for yourself, please share your findings with us.

[cheerleader]

Hi Lovelace--
The first 41 patients treated for CCSVI in MS in the states were at Stanford. There were some very positive and very negative results--and some in between. My husband was the first treated at Stanford. He had cluster headache, papilladema, tinnitus (all noted in IHH) and an MS diagnosis prior to stenting. He's been MS progression free since his treatment, and all of his symptoms resolved, along with reduced fatigue, heat intolerence and spasms. This procedure did not help everyone, but helped him.

Because of this, Dr. Ryan McTaggert became interested in learning more about CCSVI in pwMS and in normals, and undertook a blinded MRV study with Stanford colleagues. His piece is in the new AJNR issue.

Here's Dr. McTaggert on the study:

When I began my fellowship training in diagnostic neuroradiology and interventional neuroradiology at Stanford University Medical Center in 2010, both the medical world and the lay press were abuzz with the possibility that both MS and idiopathic intracranial hypertension could be, in part, vascular diseases secondary to insufficient venous drainage of the head and neck. Given the far greater prevalence of MS, and Stanford University’s early experience (both positive and negative) with angioplasty and stenting for CCSVI, I chose to further explore the CCSVI hypothesis of MS.

Fully expecting to contribute another “no difference” paper to the accumulating MS vs. healthy control literature, I was surprised when my well-blinded expert readers (Drs. Nancy Fischbein and Greg Zaharchuk) discovered anatomic differences between our study groups. In our paper published in the September 2012 issue of AJNR, we reported anatomic differences between patients with MS and healthy subjects—notably, patients with MS had greater internal jugular vein (IJV) flattening and a trend toward more non-IJV collaterals than healthy subjects.

Furthermore, at present there is no convincing evidence that endovascular therapy provides any benefit to patients with MS, and it may in fact pose unnecessary risk. Conversely, endovascular therapy does seem to benefit some patients with idiopathic intracranial hypertension.

http://ajnrdigest.org/extracranial-veno ... -controls/

Here is more on stenting for IHH---what helped my husband. It is worth discussing with an interventional neuroradiologist....since it is an accepted practice in IHH treatment.

The importance of venous sinus disease as a cause of idiopathic intracranial hypertension is probably underestimated. Patients with idiopathic intracranial hypertension should be evaluated with direct retrograde cerebral venography and manometry. In patients with venous sinus lesions, treatment by an endoluminal venous sinus stent is a safe and effective alternative for amenable lesions.

http://www.ncbi.nlm.nih.gov/pubmed/17336341

The pathophysiological mechanism in IIH requires further elucidation, but venous sinus stenosis with subsequent intracranial hypertension appears to be an important mechanism in at least a subgroup of patients with IIH. Among these patients, 78% had complete relief or improvement of their main presenting symptoms after endovascular stenting. Resolution or improvement in papilledema was seen in 85.1% of patients. Endovascular stenting should be considered whenever venous sinus stenosis is diagnosed in patients with IIH.

http://www.medscape.com/viewarticle/714384

Bring this info to your doctors. Learn more at http://www.ccsvi.org Hang in there!
Good luck to you-
cheer

[Cece]

Here's the improvement reports thread that Anonymoose referenced: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic16157.html

CCSVI is controversial but there is a possibility that the outflow obstructions in the jugular veins would cause slower flow and higher pressure in the venous sinuses of the brain. Cerebrospinal fluid drains into the sinuses of the brain through what's called arachnoid granulations and then the sinuses drain into the jugulars. Some of the improvements seen in people after being treated for CCSVI may be caused by improvements in cerebrospinal fluid flow. It's relatively easy to get checked for CCSVI by doppler ultrasound and to get treated by outpatient angioplasty. Insurance might pay or might not. There are some risks to angioplasty and there are unknown benefits to getting this treated so it is a judgement call between patient and doctor.

My own jugulars were severely blocked. 80% blockage on one side and 99% on the other. I wouldn't have known to get it checked except for what I read here at TiMS.

[Boo22]

Lovelace,

Have you had any luck since this post? I am a 32 year old female, and I was diagnosed 3/11 with IIH, but I'm not a typical presentation since I am very thin, and always have been. I think I have MS and secondary IH because there are so many symptoms that don't quite make sense with IIH like my afternoon fatigue like yours, violent hiccups, electric shock up my neck with wrong movement, hands and feet always tingle and have not been on diamox since 2011, memory lapses, pain everywhere, no period for 24 months, hot flashes, trouble regulating internal temperature (sometimes I can see steam rise off my chest!), low grade fevers, increased frequency of urination (comes and goes), muscle spasms and twitches (sometimes the whole limb twitches or sometimes I can just feel one muscle twitching inside), and really cold feet and hands.

Diamox didn't work for me at all. My doctors keep treating me like I am making all this up, but I'm not! I was successful and worked full time up until the fatigue forced me to resign from my job. I would be working now, but the culmination of my symptoms makes that impossible. I have been suffering for almost 3 years with no real answers. I just want someone to take me seriously and help me secure the correct diagnosis and help. I have been waiting since 2011 and almost at my wits end. Everyone keeps telling me to wait for the lesions to show up on my MRI, but I don't know how much longer I can wait with no help re my symptoms Just hearing from you might help. Many thanks!

Boo

[Boo22]

I also wanted to say that I have two shunts in place bc when they did my lumbar puncture the CSF was so built up it squirted out my back and hit the hospital room ceiling! They couldn't get an accurate opening pressure bc the pressure from the CSF made attaching the manometer impossible. They charted it as 55+ immeasurable. This happened again during my shunt surgery two weeks later. When the neurosurgeon drilled the burr hole in my skull, he was hit in the face mask with CSF squirting out. I was in severe pain to say the least. Doctors had turned me away for months telling me there was nothing wrong with me, and I wished they all could have been present for the puncture result! I was having massive headaches, papilodema, pulsatile tinnitus, nausea, and vomiting.

Anyway, the IIH is under control finally, and my headaches, pulsatile tinnitus, and papilodema are all gone. Sometimes I hear tinnitus still, but rare. And I can usually hear it when these others symptoms (the possible ms ones) are flaring up. Let me know if you are interested in comparing our cases. Perhaps somehow we could help each other get through this even from far away. It's so lonely, and the doctors have no sympathy. If they can't see your symptom on a medical test of theirs, then in their mind, you are making it up.

For the MS'ers, I have constant nausea 24/7. Sometimes I have respites from it, but it's pretty constant these days. Did anyone with MS have serious nausea issues? Also, hiccups? I get them once or twice a day and they can last for ten minutes to the whole day. They are almost violent hiccups. They are so loud my sister can hear me two floors up! They become quite painful after a while as well.

Thanks everyone!

[centenarian100]

I also wanted to say that I have two shunts in place bc when they did my lumbar puncture the CSF was so built up it squirted out my back and hit the hospital room ceiling! They couldn't get an accurate opening pressure bc the pressure from the CSF made attaching the manometer impossible. They charted it as 55+ immeasurable. This happened again during my shunt surgery two weeks later. When the neurosurgeon drilled the burr hole in my skull, he was hit in the face mask with CSF squirting out.

Haha. amazing.

With regards to the suggestion that pseudotumor cerebri (idiopathic intracranial hypertension) is caused by CCSVI, it is a somewhat implausible idea for the following reason:

Cerebral spinal fluid is created by the choroid plexus and circulates through the ventricular system and out of the foramina of magendie and luschka and into the subarachnoid space where it is resorbed into the venous system by the arachnoid granulations.



If the venous drainage from the head were impaired, one would expect decreased drainage of cerebrospinal fluid and enlarged ventricles which is generally speaking the opposite of what is seen in IIH where normal or slit like ventricles are seen:



Of course, it's possible that you have MS and IIH, but it is fairly unlikely that you have MS if you had no brain lesions noted on your MRI

best of luck.

-c

[centenarian100]

I actually found an interesting case report with "pseudotumor cerebri" caused by saggital sinus thrombosis in an 11 year old

http://www.ncbi.nlm.nih.gov/pubmed/23549165

Of course, this person had ENLARGED ventricles! I supposed it is a misnomer to say that he had pseudotumor cerebri. In reality, he had hydrocephalus secondary to dural venous thrombosis.

To be fair, various reports have suggest a possible link between intracranial venous anomalies and IIH. For instance:

http://www.ncbi.nlm.nih.gov/pubmed/23176141 (correlation between intracranial venous anomalies and IIH)

http://www.ncbi.nlm.nih.gov/pubmed/22149379 (dural venous stenting for IIH)

http://www.ncbi.nlm.nih.gov/pubmed/22766676 (suggests elevated extraventricular volume of cerebrospinal fluid)

Hm...I suppose I may have to rethink what I said in my prior post. It seems more likely that there could be multiple causes of IIH, some of which could be venous.

[cheerleader]

Boo22--your case sounds pretty severe! The nausea and hiccups aren't familiar to me (maybe vagus nerve issues?) Hope you are doing OK. The only other thing I would look into would be mechanical issues in your cervical spine, like at out of alignment atlas, which may be affecting your CSF flow and vagus nerve. The doctor to discuss this with is on the CCSVI forum, Dr. Michael Flanagan.
Here is the thread:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14005.html
Here is his blog:
http://www.upright-health.com/cerebrospinal-fluid.html

Centenarian---Let's not forget normal pressure hydrocephalus (NPH) and venous drainage. It's not always as evident a diagnosis as IIH. The third ventricle isn't always as large (and sometimes it's mistaken as brain atrophy in MS)

CSF production, flow and drainage from the brain is inexorably linked to venous drainage from the brain.CSF pressure in the ventricles is normally slightly higher than venous pressure so that it’s flow is toward the veins.
The CSF pressure gradiant is very small so that venous drainage issues, such as back pressure in the veins in the basement of the skull, can affect intracranial compliance. It can also affect cranial hydrodynamics resulting in either too much CSF in the brain, called normal pressure hydrocephalus in adults

http://uprightdoctor.wordpress.com/ccsv ... odynamics/

In the 1960s, a neurosurgeon in Bogota, Columbia made the controversial claim that he could reverse neurodegeneration by surgically diverting an excess of cerebrospinal fluid (CSF) by placing a shunt in his patients.

Professor Salomon Hakim first published his thesis in 1964 and then published 6 case reports of "normal pressure hydrocephalus" in The New England Journal of Medicine and the Journal of the Neurological Sciences in 1965. Hakim rose to the forefront of academic medicine as he described a newfound ability to reverse symptoms of “neurodegeneration” that had long been considered irreversible.
http://journals.lww.com/neurosurgery/Ab ... re.21.aspx

It is important to understand that today, 60 years after Hakim's discovery, treating normal pressure hydrocephalus is an accepted practice, even though diagnosing NPH is an inexact science. There were never any double blinded clinical trials for this surgery. Hakim claimed he could reverse gait impairment, cognitive problems and urinary incontinence by diverting CSF flow. And the proof was in his patients' recovery. No one cries "placebo effect!" after a patient recovers mobility, cognition or bladder control once treated for NPH.

http://ccsviinms.blogspot.com/2012/11/n ... -once.html

And Jeff continues to do well--almost five years since his stenting procedure. His peripheral vision loss has stabilized. No more headaches or tinnitus. No MS progression, or new lesions. And a reversal of gray matter atrophy.
cheer

[centenarian100]

NPH and IIH are totally different disease though.

By the way, in response to your quote about how no one cries "placebo effect" for NPH surgery...

a lot of neurosurgeons are skeptical for shunting for NPH and a very conservative with the therapy, and only gait impairment is considered to have a good chance of being reversible after the procedure. The placebo effect is always at play

[ChlooBoo]

Im wondering if you have had any luck with this. im 28 an have been diagnosed with IIH but the neurologist and doctors are lost as i have so much more going on and no one seems to have an answer to what.

I started goggling my symptoms and it lead me hear to your post which i have been reading over and our symptoms are very much alike. I also have a cracking and popping when i walk and or move. its very painful and immobilizing to point of not being able to leave house for months one and being taking off work .

my family doctors is not at all helpful its like i go thee to see a "student" then a different "student" each visit so its impossible for them to see whats going on they have seen me lose over 115 lbs in a few years go from being able to eat to going days without being able to keep foods down.

their response was to put me on a form send me to a phyc ward to talk to a dr. who didn't keep me at all he actually observed what i go through on a day to day basis then he gave me pain meds and sent me home told me to find a new family doc which we don't have where i live. so my only other option is the internet and to find out whats going on myself. the pain meds help what i go through pain wise but still doesn't give me a quality of life. so i guess i just hopping someone out there has found something to help similar symptoms that i can try.

[DrGeoff]

Read this thread with interest - looks like another instance of the professionals seeking support for their own theories and not considering others

CCSVI is in the "unproven" situation right now. But, if the underlying theory is right, occluded veins can effectively "back up", so that de-oxygenated blood remains in the cranial area, reducing the supply of freshly oxygenated blood.

HBOT (or Oxygen Therapy) claims to increase the supply of oxygen in the blood, thus improving, inter alia, the supply of oxygen to the cranial area.

Problems with CSF flow (related to IH, perhaps) seem to affect cranial blood supply.

All these seem to have one thing in common - the supply of properly (adequately) oxygenated blood to the cranium.
Now it would not take very much to see if those people who benefit from HBOT (and not everybody does) also have CCSVI. Yes, I know that there are problems ("My way is better") with the procedures used to determine the presence of CCSVI, but this could be an ideal time to formalize them, and it could lead to a unified theory of MS. Such a theory might not be complete, or even anywhere near right, but it could help to reduce the fragmentation that has beset MS for many years. Of course, this would not go down well with the big pharmaceutical manufacturers, but they would soon get over it.

[cheerleader]

Im wondering if you have had any luck with this. im 28 an have been diagnosed with IIH but the neurologist and doctors are lost as i have so much more going on and no one seems to have an answer to what.

their response was to put me on a form send me to a phyc ward to talk to a dr. who didn't keep me at all he actually observed what i go through on a day to day basis then he gave me pain meds and sent me home told me to find a new family doc which we don't have where i live. so my only other option is the internet and to find out whats going on myself. the pain meds help what i go through pain wise but still doesn't give me a quality of life. so i guess i just hopping someone out there has found something to help similar symptoms that i can try.

Dear ChlooBoo--so sorry you find yourself here, and are not getting help from your physicians. If you have an idiopathic intracranial hypertension or IIH diagnosis, there are things you can do for yourself, outside of pain meds or surgery. Losing excess weight was a good start..but I was sorry to read it happened to you due to nausea! Not sure if you are a woman or man, but if you are on a birth control pill, please talk to your doctor about stopping this form of birth control and look for another. IIH is most often found in women and linked to obesity, birth control pills, and steroids. Here's more info:
http://www.healthline.com/health/pseudo ... #Overview1

In my husband's case, he was not overweight, female or on BCP....he had a stenotic dural sinus which caused his IHH. It is now gone, thanks to this approved medical procedure for dural venous stenosis.
http://www.medscape.com/viewarticle/777216
Hope you find some answers, but this MS forum probably won't be the place to get the best response.
Here's an IIH support forum. http://www.iihsupport.org
all best,
cheer