Medication Options for Intracranial Hypertension

• Somewhat Helped Me

What Is It?

Acetazolamide (Diamox) is a diuretic that is perhaps the most common medication prescribed for IH.

Though often used for altitude sickness, this medication doubles in helping reduce the amount of spinal fluid within the body. It also helps treat conditions such as glaucoma, epilepsy, and edema.

Diamox is a carbonic anhydrase inhibitor. Carbonic anhydrase is an enzyme found in your red blood cells and other parts of your body. It helps your body reabsorb sodium (among other things). Diamox, acting as an inhibitor, expels this sodium. Since water typically follows sodium, fluid in the body is reduced as well.

My Experience

I actually asked for Diamox (Acetazolamide) before I was officially diagnosed. I knew my body, and I was tired of waiting for a spinal tap to prove what I already knew was wrong.

The problem was, I had never experienced a chronic illness before. I was used to taking medications that worked immediately. I thought I could just take Diamox as needed and that it would relieve symptoms within thirty minutes or so. I did not allow it any time at all to build up in my system, nor did I work to find the right dosage. Instead, I stopped it as quickly as I started.

Months later (after officially being diagnosed), I was prescribed it for good – 500 mg three times a day. It was a love-hate relationship from that point on, with doses fluctuating anywhere from 750 – 2,250 mg per day.

Side Effects

Unfortunately, Diamox seems to have no limit when it comes to side effects. Overall, you just feel medicated while taking it.

The first side effect mentioned by my neurologist was paresthesia. Paresthesia is a tingling, numbing “pins and needles” sensation in the body. It is often felt in the fingers and feet, but it certainly isn’t limited.

For me, paresthesia has gotten so strong that even my face has been affected. Sometimes, touching my face would make my skin feel like fairy dust. My eyes would twitch, and my lips could tremble to the point of feeling paralyzed, as if I couldn’t operate them the way I wanted to. I eventually learned that these sensations were often (though not always) worsened by dehydration.

Side effect number two with Diamox was shortness of breath. While this can also be due to dehydration and daily medications making the body acidic, Diamox does play a role as well. Personally, prednisone worsened this symptom.

Side effect number three involved GI issues. While I could never technically prove it was the cause, I did develop frequent episodes of upset stomach and diarrhea shortly after starting Diamox. Many people report the same, as well as nausea and vomiting. Honestly, it was like having food poisoning every day and could be just as debilitating as the IH itself.

As a less important side effect, it makes carbonated beverages taste terrible.

In some, it may cause metabolic acidosis, hypokalemia (low potassium), or kidney stones.

Conclusion

So given those side effects, why did I continue to take Diamox? Because it helped in conjunction with other medications to balance the spinal fluid within my body. Though it may take time, experimenting with what dose and combination of medications work for you can be worth it.

If you find Diamox is not for you at all, don’t be discouraged. There are other options. Ask your doctor about the alternatives Zonisamide or Methazolamide (discussed below) and see if you can work out a plan together!

• Did Not Try

Amitriptyline is a tricyclic anti-depressant often prescribed for IIH. Anti-depressants tend to be quite helpful when it comes to chronic pain and nerve pain.

While I did not try Amitriptyline personally, I do feel it is still worth mentioning as an option. For reasons I do not know, my neurologist chose to try Nortriptyline first. (see medication below)

• Somewhat Helped Me

My Experience

Back when my condition first started, my neurologist suspected my symptoms may be linked to my cycle. At that time, I had roughly guessed that my bad “episodes” occurred a couple times a month. This made him think that maybe my high pressure was linked to my period and ovulation. He explained that headaches triggered by hormones were not uncommon, and women often experience them during their period due to the drop in estrogen. Of course, I imagine fluid retention could play a role as well.

Eventually, I was placed on a low-hormone birth control where I was advised to skip the sugar pills to see if symptoms stopped. This meant I would not get a period and therefore not experience that drastic fluctuation in hormones. I was also later advised to go ahead and have a period but increase my Diamox/Lasix a day or two beforehand.

Conclusion

We experimented with birth control for about two years, but findings were somewhat inconclusive. While there were months that it really did seem as if I had more headaches during my period, there were also months that I didn’t. Not to mention, there were still times that I experienced pressure increases regardless of what my cycle was doing.

Overall, I never noticed the birth control to have a negative effect on my pressure like it can for some. And though I loathe having to take it, perhaps it was for the best as it helped prevent pregnancy while I was on countless other medications that could have caused fetal complications.

• Somewhat Helped Me

What Is It?

Cyclobenzaprine is a muscle relaxant that can help with pain and stiffness that may occur due to muscle spasms.

My Experience

Flexeril never really touched much of my pain or pressure, but it was still nice to have on hand. I imagined it was doing some unseen work or at least helping with recovery.

It does however help with the Levator Syndrome that seems to have developed with this condition, and it also might help relieve the abdominal/pelvic spasms I feel from my shunt catheter. Other than that, I’m indifferent.

Side Effects

I used to take this muscle relaxant all the time with no side effects. However, as soon as I started taking Cymbalta, Flexeril would make me so tired, even into the next day. It is very important to pay attention to the way these two drugs interact, specifically looking out for symptoms of Serotonin Syndrome.

• Did Not Help Me

What Is It?

Valium is sedative and anxiety reducing medication that may be used to help treat muscle spasms.

Though not exactly a pain reliever, my neuro suggested we give this one a try in hopes of relieving the tension that IH causes in my body.

My Experience

While my back pain had gotten pretty bad around this time, the reason for prescribing this one may have been two-fold.

Stress is huge trigger for chronic pain. It was clear at this point that I had become overwhelmed in dealing with this condition, so I can’t say it’s anxiolytic and sedative effects didn’t play a role in this decision.

Conclusion

In the end, I only took it a handful of times before my husband informed me that it made me a “space cadet”. Though I felt fully functional while taking it, he said I was slow to respond and didn’t seem myself. Being it never really made a difference in my symptoms, I didn’t bother to take it again.

Side Effects

Outside of being spacey, I became very productive with meticulous tasks after daytime doses whereas I expected to feel drowsy. Also ironically, my nighttime doses may have actually caused trouble sleeping as opposed to knocking me out.

• Helped Me

What Is It?

Cymbalta is an anti-depressant that doubles as a nerve pain medication. As an SNRI (serotonin-norepinephrine reuptake inhibitor), Cymbalta basically increases your levels of serotonin and norepinephrine whereas SSRI anti-depressants only affect serotonin.

My Experience

I knew my neurologist had been doing his research when he suggested this one. Again, anti-depressants can be really helpful with chronic pain. Though my first attempt with one (Nortriptyline) didn’t work out, I am thankful we didn’t give up.

Being my pressure almost always increased at night, my neurologist suggested I take 30 mg before bed as a starter and see how things went. It felt like an absolute miracle when I discovered that it made my nighttime headaches almost completely disappear.

There were times that I wanted to add another 30mg to my daytime routine, but I refrained as my goal was always to wean off my meds and not add to them.

Side Effects

As far as side effects, I had severe nausea the first couple of days till my body got used to it. I then developed chronic fatigue, which would worsen if I took Flexeril. As a strange yet common side effect, I experienced excessive sweating at night (since I took it before bed).

Withdrawal

Although this is not a medication that you should stop cold-turkey, I did anyway. Withdrawal symptoms included “brain zaps”, random surges of emotions, upset stomach/ diarrhea, and nightmares (severe but only one night).

Caution

It is important to note that some antidepressants can interact with other medications in a negative way (E.g. Cymbalta and Flexeril can cause Serotonin Syndrome). Use caution and speak up if things don’t seem right.

• Helped Me

What Is It?

Furosemide is a diuretic that helps remove excess fluid from the body.

My Experience

Lasix was my first success. I was prescribed it upon diagnosis. Unlike Diamox, it would be my as-needed medication – my rescue. I was to take 20 mg anytime my pressure was high.

This was definitely the quick relief I had asked for and an answered prayer. But being IH is tricky (and seems to constantly evolve), Lasix was not always successful at relieving the pressure. Sometimes, the pressure would rise above what 20 mg could handle. Even up to 80 mg a day, my spinal fluid levels could be all over the place.

Still, it was always in my IV orders at the hospital because until you can get the pressure down, the pain cannot be controlled.

Side Effects

Other than having to watch for dehydration and photosensitivity, I had no negative side effects with Lasix. Still, it’s important to note that hypokalemia (potassium deficiency) or kidney/pancreas/liver damage can occur in some.

• Helped Me

What Is It?

Indomethacin is a Non-Steroidal Anti-Inflammatory medication used to relieve pain and swelling.

My Experience

This was my saving grace. Straight oxycodone was honestly my next route had this one failed. I was almost in tears trying to tell my neurologist I didn’t want to fall prey to the chain of addiction that ran in my family. But once again, his research paid off.

He believed the increase in spinal fluid pressure was causing inflammation of the meninges. He suspected this is why my back always felt like it was about to collapse.

Though other NSAID’s had all failed, 750 mg of Indomethacin was just what I needed to be able to stand pain-free again. It also relieved the episodes of inflammation in my shoulders and neck as well as some pressure headaches.

Side Effects

Now, one important thing to know with NSAID’s is that they can really damage your gut – I mean burn holes through it. Thankfully, I never experienced this. But it is still so important to never take them on an empty stomach and to keep an eye out for any symptoms of ulcers or intestinal damage.

Personally, Indomethacin tends to drop my blood pressure dramatically if I haven’t eaten a heavy enough meal with it. It can make you feel lightheaded, dizzy, nauseated, or faint. Use caution and take this one responsibly.

• Somewhat Helped Me
  

What Is It?

Meclizine and Dramamine are over the counter medications commonly used for motion sickness. Being IH is known to cause dizziness and vertigo, these medications may come in handy.

Meclizine helps relieve vertigo and motion sickness.

Dramamine is used to help relieve the nausea and dizziness that occurs with motion sickness.

I have personally developed more frequent episodes of motion sickness since developing IH. My shunt may or may not play a role in this.

Side effects include drowsiness.

• Did Not Give It Much of a Chance

What Is It?

Like Acetazolamide, Methazolamide is a carbonic anhydrase inhibitor that helps reduce the amount of (spinal) fluid within the body.

My Experience

I took Methazolamide for two days before I gave up. At this point, I was tired of bandaids and medications that needed time to take effect. I started it only two days before my impromptu shunt surgery. Perhaps it could have helped had I given it time, but I was simply done at this point. It did not provide instant relief like I needed. However, I don’t recall any side effects in those two days either.

I mainly want to mention this medication for the sake of others. If Acetazolamide (Diamox) does not work for you, Methazolamide and Zonisamide work in a similar way and could possibly be a better alternative.

• Did Not Help Me

What Is It?

Mefanamic Acid is another Non-Steroidal Anti-Inflammatory drug used to relieve pain (particularly menstrual pain).

My Experience

This was one of my first prescribed pain relievers. It was to be my rescue medication, primarily for the neck and back pain.

Conclusion

Unfortunately, it didn’t do much more than ibuprofen or any other OTC medication to relieve anything. It didn’t hurt to have on hand, but it definitely wasn’t a rescue.

Side Effects

Being this is an old school NSAID often used to treat period cramps, I did notice it lightened my period to pretty much nothing if I took it during that week.

• Did Not Help Me
  

What Is It?

A “Migraine Cocktail” is a combination of medications that work together to provide relief for Migraine. While the exact medications used can vary, a common example would be a concoction of Benadryl, Compazine or Reglan, and Toradol.

My Experience

It’s not uncommon to go to the ER for relief from IH only to have a nurse push a “Migraine Cocktail” through your IV before ultimately handing you discharge papers. Perhaps this remedy works for some, but it definitely doesn’t work for me. Until you lower the intracranial pressure, it is almost impossible to stop the other symptoms.

I’m not sure how many times we have tried this method, but I do know that my first Migraine Cocktail did not relieve my pain. Instead, it made me feel like I wanted to climb the walls. I blame the Compazine/ Reglan part of it.

Another attempt happened to knock me out. I thank the Benadryl part of it.

My last attempt was the absolute worst. It was a mixture of both effects, feeling completely awake all while fully immobilized from fatigue. It is what I imagined being roofied feels like. I was still in conscious, severe pain yet unable to communicate and barely able to move. I never want to experience that again.

• Did Not Help Me
  

What Is It?

Nortriptyline is another tricyclic anti-depressant that may be helpful with chronic pain and nerve pain.

My Experience

I am not sure why my neurologist chose this one as opposed to the more common IH medication, Amitriptyline, but I will say it did not work for me.

Though I had no noticeable side effects from this medication, I also found no relief from the pain despite having taken it for a couple of months.

I suppose it is worth mentioning that even as an anti-depressant, it didn’t stop me from slipping into worsened mental health over what I was going through.

• Somewhat Helped Me

Ondansetron is a medication used to treat nausea and vomiting. Unfortunately, it can be hit or miss because once again, it is almost impossible to relieve symptoms until you first relieve the pressure. Still, I like to keep it on hand just in case as well as to help with the motion sickness I tend to experience. I also prefer the dissolving tablets.

• Somewhat Helped Me
  

What Is It?

Percocet is a combination drug of the opioid oxycodone and the pain reliever acetaminophen.

My Experience

I was always afraid to take this one too often and become addicted. Had it done more to relieve my pain, perhaps I would have, but unfortunately it didn’t.

At first, I thought maybe it would at least knock me out through the pain. But I learned that I could still be fully functional while on it, only more relaxed. And that’s basically all it did. It relaxed me through the pain as opposed to removing the pain altogether.

Addiction runs strong in my family, so to me, that feeling wasn’t worth risking the possibility of addiction.

• Did Not Help Me

What Is It?

Compazine has a few uses in the medical field, but it’s positive effect on headaches often makes it a part of the classic “Migraine Cocktail” (see medication above). It can also be used to treat nausea and vomiting, other common symptoms of IH.

My Experience

I was first introduced to Compazine in the ER when they thought a “Migraine Cocktail” would ease my symptoms. At some point during one of these ER admissions, I was sent home with this drug to help relieve my pain.

Unfortunately, it didn’t take long to discover that it was this part of the migraine cocktail that gave me the terrible restless sensation. It felt like restless leg syndrome in my whole body. This heavy, anxious, antsy feeling would last several hours. It really tested my mind over matter philosophy. However, it did seem to be less annoying if taken at night or while truly resting.

Because of this, I chose to save it as a last resort or to only take it at night till eventually I just stopped taking it altogether.

In the end, Compazine did nothing for my pain, and that’s all that mattered.

It’s a bit ironic when you consider that Compazine is also used to treat anxiety. This is why I stress that each and every person reacts to medication differently. You simply won’t know unless you try.

• Somewhat Helped Me

What is it?

Spironolactone is a potassium-sparing diuretic often used to treat patients with hypertension (high blood pressure) or edema (fluid retention).

It is also used as an acne medication due to its effect on hormones. Specifically, it inhibits the hormone, aldosterone, which regulates potassium and sodium in the body. In addition, it helps block the androgen hormone which coincidentally is found to be in excess in many IH patients. (Double win??)

My Experience

I had turned this medication down a couple years ago due to it’s potassium-sparing aspect, but I decided to go ahead and give it a try following my shunt revision surgery when I became tired of taking Diamox.

My neurologist suggested it may help stabilize my pressure for more prolonged periods of time in order to keep it from bouncing back and forth between highs and lows.

I remained on it for several months and noted it seemed to be just as effective as Diamox but with far less side effects.

There were still episodes of high pressure, but that has always been the case for me, even with a shunt and medication.

Side Effects

Personally, there was some nausea and light-headedness, but both can also be symptoms of IH.

With this medication being potassium-sparing, it is usually advised to watch your potassium intake in order to avoid hyperkalemia (high blood potassium levels).

Otherwise, I was happy to not feel so medicated as I did with Diamox.

• Often Helped Me

(Specifically Prednisone & Dexamethasone)

My Experience

There was a time that I thought a few rounds of IV steroids was my cure. I honestly left the hospital, cut up my bracelets, and said my chains were gone. But once again, they were just another bandaid. They help, but they are not the final answer.

Even though I know now that steroids can have rebound effects, it still doesn’t stop me for asking for them. When you have tried everything you have at home and have found no relief for days, you will take anything.

Thankfully, my neurologist was flexible with this. I didn’t always have to go to the ER or be admitted. Sometimes it would simply be a quick infusion or even just a call-in for a prescription. There were options.

Side Effects

Of course, steroids have endless side effects. For me, I have noticed an increase in appetite, a false sense of incredible energy, insomnia, blood sugar problems, and my vision going black.

Since many doctors believe weight may have a relation to IH, steroid treatment isn’t recommended longterm due to its tendency to cause weight gain.

• Did Not Try

What Is It?

Topamax is an anti-convulsant and nerve pain medication, touching quite a broad range of health conditions, such as bipolar disorder, migraine, and epilepsy.

When it comes to IIH, it serves multiple roles. It may not only work as a pain medication but as a pressure reliever. Like Diamox, Topamax has a carbonic anhydrase inhibiting effect. Basically, it helps reduce the amount of spinal fluid your body produces.

It’s tendency to cause weight loss may also be a positive side effect for those whose IIH is caused by weight.

My Experience

Though I declined trying this medication, I do feel it is important to mention as it is one of the most commonly prescribed medications for IH.

There are three reasons I chose not to take Topamax:

1.) Too often, I’ve heard this medication referred to as “dopamax”, meaning it makes you dopey. This is not to knock those who take it. Everyone reacts to things differently. I personally didn’t want to risk being home alone with my child while spaced out on a drug.

2.) It is known to cause birth defects if taken while pregnant or breastfeeding. Not that we were trying, but I was not using any contraceptive measures at the time this was suggested.

3.) I was already borderline underweight. My neuro didn’t think it was wise to risk losing any more.

Overall, it is worth discussing with your healthcare team.

• Did Not Help

What Is It?

Zonisamide is an anti-convulsant that also acts as carbonic anhydrase inhibitor. Again, it reduces the amount of spinal fluid within the body. (see Acetazolamide above)

My Experience

When my neurologist and I discussed the patterns of when my pressure increased, we felt the diamox was not lasting in my system long enough to prevent the nighttime/ early morning increases. So in hearing that Zonegran was a Diamox alternative that could last up to 14 hours, I thought for sure this would be it. I was so disappointed.

I started at 100 mg a night with the instructions to increase to 200 mg the next week and then 300 mg the week after that. I took it for two weeks, even trying the 300mg, but I only felt worse.

IH headaches can present themselves in different ways, but I really feel like Zonegran worsened the sharp, stabbing left-sided pain I would experience.

I ended up switching to Methazolamide and ultimately undergoing shunt surgery a couple days later.

Though I wasn’t on either of these Diamox alternatives for long, I like to mention them to show others that there are options if Diamox does not work for you.