Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hello ALL. I'm 34 years old and 22 weeks pregnant. I was diagnosed with PTC this week after many many weeks of unbearable headaches, vision blackouts, neck/back pain, arm numbness, and vomiting. As you can imagine- all these symptoms got lumped into the "Well, you're pregnant" category. I finally had an MRI- which was normal and then saw the opthamologist and he diagnosed me based on stage 4 papilledema. The next day I had a lumbar puncture which showed an opening pressure of 40. They started me on Diamox 1 gram a day and then increased me to 2 grams a day. I hate this! I felt like I was going crazy before becasue of all these weird symptoms and everyone just looks at you and says "we all go through it... you're just pregnant". Now that I have a diagnosis I'm suppose to feel better. Well... I don't I feel worse! And now everyone's favorite line is "well after the baby come you will lose weight and it will all be fine" Maybe that will work but what about the 18 weeks I have to deal with between now and then?! I think everyone else feels better because I now have a diagnosis but until I start to actually feel better it's hard for me to be happy. Since starting the diamox I have :
severe headaches
still have eye pain
still have some visual grey outs but significantly less
pins and needles in my hands and feet
numbness in my hands and around my mouth
I'm exhausted ALL the time
My head is in the clouds
and maybe the worst- my knee joints hurt SO bad- I almost can't even walk anymore- it's progressively getting worse and worse.
I only started the Diamox 4 days and I do know that maybe some of these symptoms may go away but can anyone help me with the beginning of this roller coaster? Any ideas on how to help me through these side effects? Also, I have been reading about diet playing a role but can anyone go into detail about diet? Any information you may have for me would be greatly appreciated!
Thank you,
D-
severe headaches
still have eye pain
still have some visual grey outs but significantly less
pins and needles in my hands and feet
numbness in my hands and around my mouth
I'm exhausted ALL the time
My head is in the clouds
and maybe the worst- my knee joints hurt SO bad- I almost can't even walk anymore- it's progressively getting worse and worse.
I only started the Diamox 4 days and I do know that maybe some of these symptoms may go away but can anyone help me with the beginning of this roller coaster? Any ideas on how to help me through these side effects? Also, I have been reading about diet playing a role but can anyone go into detail about diet? Any information you may have for me would be greatly appreciated!
Thank you,
D-
First, Congratulations on your pregnancy :)
However, I am so sorry that what is supposed to be an exciting time filled with newness and anticipation has been a time of pain, discomfort, and scary symptoms...let alone a rare illness those around you have never heard of and as with most families "you look fine, you must be fine"
I imagine some some of your PTC symptoms are probably worse while pregnant. For example, Diamox is a diuretic, and most pregnant women need to use the bathroom often, so combined with Diamox, I imagine you must feel like you have to go to the Ladies' all the time!
To ease some of your symptoms, you will need to ask your Dr, b/c I am NOT a Dr and would never want to suggest anything that could harm you and the baby, but here are some ideas you can run by your Dr to see if they are safe to use while pregnant:
Eye Pain/Headaches- There is a Med called Topamax which is great for the headaches, not so sure how safe it is while pregnant, so check with your doc...otherwise check with your doc about Alleve, or taking alternating doses of Tylenol and Advil-make sure you ask what mg tabs are safe and the max # of tablets are safe for you, then take a dose of Tylenol, and 4-6 hours later a dose of Advil and alternate all day like that.
If meds are not an option for your pain, ice packs/heating pads whichever sound appealing to you can work wonders.
Grey outs in vision-Absolutely call your Dr ASAP about this. Even though it is improving, you are still experiencing some vision loss, and you do not want it to become permanent. Keep your Optho informed of your vision constantly until you see clearly...be a pest if you have too...this is your eye sight, don't worry about the DR, worry about your vision.
Pins and Needles- This is one of the most common side effects of Diamox. It is considered minor and there is not a whole lot to be done with it. Same goes for localized numbness in the face and extremities. However, since you are pregnant, I might advise checking in with your OB/GYN to make sure you have no circulatory problems, so you know for sure it is the Diamox.
Exhaustion- Diamox can make you tired...sometimes it wears off. You may be feeling extra tired because you are pregnant...again a quick check up with your OB/GYN might be good.
I'm pretty sure joint pain is not related to Diamox or PTC...so again, a check up with your OBGYN or Primary Care Dr might be good.
Dieting while pregnant....were you advised to do this? In some cases of PTC, being obese does make the condition worse, and for others, weight does not matter. I feel that all people PTC or not should eat a healthy diet and exercise to the best of their ability, for the sake of overall health, not just b/c of PTC. The weight issue with PTC is very controversial.
Again, I'd ask your OB/GYN, but I would think a diet with lots of fruits and vegetables, lean protein, would be good...as for a weight loss program, that might have to wait until after the baby, and many people lose weigh after the baby if they breast feed.
Diamox is a harsh med and it makes most of us feel pretty lousy, but it tends to be effective in treating PTC for many people. It is important to remember to drink plenty of clear, caffine-free fluids all day and to eat at least 1 banana, or a glass of OJ each day to replenish the potassium that Diamox drains from your body. Raisins are a great snack to take a long with your to much on and they have lots of potassium.
So, in this big long post, what I am trying to say, is bring some of these options to your Dr first before trying them. Your OB/GYN probably has lots of tips and tricks for dealing with some of the symptoms that may be pregnancy related, and do not wait to call your Ophthalmologist about the status of your eyesight,
I truly hope that your body starts to adjust to the Diamox so you can start feeling better.
It is nice to have you hear, and you will meet a great group of people with great knowledge and insight, so please post whenever you want.
At this time, just keep in mind that your pregnancy does make treatment different and to always run our ideas by your Dr first so no harm comes to you or your baby
Best, LuLu
losing weight while pregnant is usually not recommended, but if you started out overweight then the doc might recommend a nutritionist to help with just not gaining much more. BUT, since the THEORETICAL mechanism for how obesity contributes to IIH is via the obese abdomen leading to increased intra-abdominal pressure causing increased central venous pressures which can reduce CSF drainage, and with a mass (baby) in your abdomen you are already in this situation then I am not convinced that losing weight is going to make a dent in this process. intra-abdominal pressures will continue to increase throughout the pregnancy regardless.
Amy
Ugh....it makes my skin crawl to hear Dr's still offering serial spinal taps as a form of treatment.
I hope your Dr was just offering this as a temporary measure until after the baby is born?
BTW, congrats on having a baby! How exciting :)
NakhNakh - definitely get in with a perinatalogist. i felt so much better after seeing them. they have experience with shunts and pregnancy complications. good luck!
You've gotten lot's of good advice. I'll just add a few thoughts.
I always check both drug interactions and condition contraindications for any drug I put in my mouth, whether it's OTC or prescription. Drugs.com has the ability to do this. Look at the menu across the top. If a drug is on the interaction list it doesn't mean I won't take it, it just means I ask my doctor specific questions about it. Be very careful not to take aspirin while you are on diamox. Also on the interaction list, many laxatives, herbal remedies like ginko, and most forms of insulin, antacids, abuterol (asthma inhaler), and most forms of magnesium (which many take for migraines).
There are quite a few non-drug things that are of some help to me. I try not to provoke an IH headache or make it worse. I don't bend over a lot. I use a mechanical grabber to get stuff off the ground. I sleep half way sitting up (at least a 30 degree angle). I stay away from meds and foods that raise csf pressure, like opiates, salt, foods high in vitamin A, an antibiotic that I can't remember. Help me out here, gang. What are the other drugs that raise csf pressure?
If I do get a headache I try resting in a cold dark, quiet room, under a warm blanket, with ice around my head and neck. Remember to recline and not lay flat.
Last thought, while you are on diamox try to eat lots of potassium rich foods. Just google and you'll have a million lists. Your doc may also want to run your blood gasses often at first, especially since your're pregnant. Blood that is too low in bicarbonate (CO2), and too low in potassium (K) might be a cause for concern, but it can usually be easily fixed.
Keep us posted, okay?
Sorry for the late response. Things have been going "ok" for me. I was diagnosed at 22 weeks pregnant and am now 29 weeks along. I started on the Diamox since it's really the only safe drug the neurologist and perinatologist want me to take. At first it was tough getting adjusted to the drug from the stand point of keeping hydrated. My biggest problem throughout has been the almost unbearable joint pain that I'm experiencing. I have seen that it can be caused from the Diamox. The pain started as soon as I started taking the medication so all my doctors are convinced that it is fromt the medication, But nobody really understands the amount of pain that I am in on a daily basis. It's all day and constant. My left shoulder is so bad that I'm getting physical therapy and they can't really figure out why there is so much inflammation around the joint...
Other than the joint pain things were going pretty well. I was no longer having headaches or vision loss. Just this week though- the headaches are back and I have the wooshing in my ears that nobody but you guys can understand. I do have a small head cold and I'm hoping that maybe that is aggravating things but I'm really concerned because these symptoms feel all too familiar...
I feel like if they want to increase the Diamox I may scream because of the pain I am in but I do know that I have to do whatever I have to for this baby... Thanks for listening, I think I just needed to vent- nobody understands what I'm going through and it's so hard to explain.
I hope you are all doing well- I read a lot of the posts but just haven't posted myself so I've been following a lot of your lives :)
Thanks,
NakNak