Medical treatment and Monitoring in IIH
Introduction When you have Idiopathic Intracranial Hypertension it is important that your vision, symptoms and medication are monitored on a regular basis. This could be on a 2, 3, 6 or 12 month basis depending on your case. This booklet explains the treatment, monitoring process and eye tests. It also provides information on the type of medications used to treat IIH, including information on other medications you may have been prescribed as use for pain relief. Monitoring your IIH Once IIH has been diagnosed your Doctor will prescribe you medication to treat the symptoms and control the cerebrospinal fluid (CSF) levels around your brain and spinal cord. There are several medications that do this and your Doctor will decide which one they think is more suitable for you. You must take the medication as prescribed by your Doctor who will write to your GP with information of your diagnosis and treatment. Your Doctor may advise you to lose weight which can be beneficial to some patients with IIH. They may even refer you to a Dietician. If you take birth control your Doctor may tell you to use another method of contraception, as some birth control pills contain Oestrogen that can increase the risk of raised pressure. Vision Tests You can expect to have regular vision tests including Visual Field tests, sight tests and fundoscopy (where a small torch is shone into your eyes enabling the doctor to examine the back of your eyes). More information about these tests is provided in our leaflet Diagnostic Tests for IIH.
Scans, Weight and Blood Tests You may also have MRI and/or CT scans so that your Doctor can see if there have been any changes, which will enable them to compare with previous scans. It is quite possible that your Doctor will want you to have blood tests so that they can monitor the effects of the medication on your kidneys, especially if they are a diuretic, which make kidneys work harder. At your appointments your weight will also be monitored, so it is quite possible you may be weighed at each appointment, as losing weight may benefit, and improve your symptoms, which could lead to remission. When you next see your Neurologist or Neuro-Ophthalmologist, he or she will look at the back of your eyes, and then ask you about any problems you are having and how things have been. If necessary they may change your medication dose or the medication to another type if you are still having problems. If you are having headaches and your optic nerves are swollen, you may be told you need a lumbar puncture. How often you are monitored is dependent on your progress and can vary in terms of time limit between appointments. Your Doctor will tell you when they need to see you again, and an appointment will be sent to you through the post. If you find that between appointments you are experiencing headache and other symptoms, contact your Neurologist to request an appointment via their Secretary, or at the clinic you attend. Ask your Doctor about this if you are not sure. What medication is prescribed for IIH? Your doctor will decide which course of medication is the best for you as each individual is different, so your treatment is tailored to your own requirements. Every patient who has IIH are not always given the same medication, this will be dependent on what your Doctor thinks is suitable for you and will benefit you the most. Each patient s response to a
medication can differ. We have listed some of the side effects experienced. Often these lessen as you become used to the medication. It is important to continue taking your medication even if you feel well, unless your doctor tells you to stop. Make sure you read the leaflet that comes with your medication. Do not stop, or change the dosage of any medicine before checking with your Doctor first. For many of the medications used to treat IIH, doctors will tell you that common side effects, such as dizziness or drowsiness may mean that you should be cautious about driving or using heavy machinery. Please pay particular attention to this information; is it not repeated under each medication listed below. Diamox/Acetazolomide Diamox is a diuretic and also what is called a Carbonic Anhydrase Inhibitor. Its purpose is to decrease the amount of fluid that can build up in the eyes, and also to lessen the build-up of body fluids. Common side effects you may experience with this medication are usually tingling in the hands and feet, increase in urination, metallic taste in the mouth, loss of appetite, sickness, upset tummy, tinnitus, irritability and tiredness. Diamox may also cause some sensitivity to the sun and it is advisable to use sunscreen, avoid prolonged exposure to the sun, tanning booths and sunlamps. It is also advisable to limit alcoholic beverages. This medication could make you drowsy, dizzy and experience blurred vision. This medication can also cause your blood sugar levels to rise. Tell your doctor immediately if you develop symptoms of high blood sugar such as increased thirst or tiredness. If you are diabetic this medication could cause your blood sugar to drop and cause fast/pounding heartbeat, shakiness, hunger and sweating. Topamax/Topiramate Topamax or Topiramate is used to treat problems with nerves and chemicals in the brain. Another use is to prevent Migraines from happening.
Side effects include a change in taste, numbness or tingling in hands and feet, nausea, indigestion or stomach pain, loss of appetite, weight loss, diarrhoea, tiredness and dry mouth, drowsiness, dizziness, impaired judgement. Do not drink alcohol while taking Topamax/Topiramate. Drink plenty of fluids and wear light clothes when exercising, especially in hot weather, because this medication can cause decreased sweating, which means your body temperature can rise, risking the chance of heatstroke. Methazolamide/Neptazane Methazolamide or Neptazane is like Diamox or Acetazolomide, a carbonic anhydrase inhibitor. It is used to lower eye pressure in the eye, and is sometimes used with other medication. Common side effects of this medication can be nausea, loss of appetite, change in taste, tingling in hands and feet, vomiting, diarrhoea, frequent urination, dizziness, drowsiness, or tiredness. As with Diamox/Acetazolomide it is advisable to use sunscreen, avoid prolonged exposure to the sun, tanning booths and sunlamps. It is also advisable to limit alcoholic beverages. This medication could make you drowsy, dizzy, affect alertness and experience blurred vision. Furosemide/Lasix Furosemide or Lasix is a strong diuretic which is also a loop diuretic, which is prescribed to prevent fluid building up in your body known as oedema. There are also common side effects with this medication, which your Doctor will tell you are a dry mouth, tiredness, muscle pain, stomach irritation, rash, nausea, low blood pressure and altered balance of fluid or chemicals (e.g. sodium, potassium). Diamox Methazolamide and Furosemide can reduce the potassium levels in your blood so it is possible your Doctor may recommend that you eat foods rich in potassium (e.g., bananas or orange juice) while you are taking this medication. Your doctor may also prescribe a potassium supplement for you to take during treatment.
Other medications you might be prescribed Gabapentin Gabapentin is prescribed to treat peripheral neuropathic pain which can be caused by a wide variety of diseases. It can take a few weeks before you feel the benefits of this medication. It can also make you drowsy and dizzy so avoid driving or operating machinery. Co-codamol Co-codamol is usually used as required to treat pain. Do not take any other medication that contains paracetamol. Tramadol Tramadol is used to treat pain by acting on nerve cells in the spinal cord and brain. It prevents the pain messages travelling to your brain so that it stops you from feeling less or no pain. You should not drink alcohol whilst taking this medicine. Diclofenac Sodium Diclofenac Sodium is a painkiller and an anti-inflammatory which works by blocking the action of some of the body chemicals responsible for causing pain. This medication can cause skin sensitivity to the sun. Lumbar Puncture When intracranial pressure is raised a lumbar puncture is performed to lower the level of the cerebrospinal fluid (CSF). It also measures the pressure, and is always done to confirm the diagnosis of IIH. A local anaesthetic is injected in to your back, and a hollow needle will be inserted into the lumbar area of the spinal canal (lower back), this is where the cerebrospinal fluid is contained. Then spinal fluid will be taken to reduce and measure the pressure. It may be sent to the lab for testing. Some people experience a low pressure headache afterwards which is not to be confused with a raised pressure headache. A low pressure headache has the following symptoms; a dull or throbbing pain at the
front of the head, which can sometimes spread to the neck and shoulders causing stiffness. The pain is usually worse while standing or sitting up and is usually relieved by lying down. The headache can usually be treated with paracetamol or other simple pain relief. Having drinks containing caffeine, such as coffee, tea and or cola, can help to reduce discomfort as well as a cold cloth on eyes and forehead. If you start experiencing severe headache, vomiting and/or fever, and develop sensitivity to lights, contact the ward where you had your lumbar puncture performed immediately. Some people find they have back ache at the site of the lumbar puncture; this can last for a few days and can be treated with simple pain relief. It could be the area is sore and bruised from the lumbar puncture and needs a few days to settle back to normal. If you notice the area is swollen, painful, bleeding or leaking clear fluid contact the ward where you had your lumbar puncture immediately. Monitoring during pregnancy Monitoring pregnancy may be managed differently in terms of Neuroimaging (scans) and medication. Your symptoms may worsen during pregnancy and improve after your baby s delivery. Treatment will be aimed at making any pain more bearable and to prevent vision loss. Your vision may be monitored every two months. Diamox/Acetazolomide may still be used to control your CSF levels if you Doctor thinks it necessary. If you are pregnant or considering pregnancy discuss how your IIH will be managed with your Doctor.
The I Have IIH Foundation The I Have IIH Foundation is registered charity in England and Wales, no. 1155833. We provide online support, information and practical help and advice. We support patients with IIH and their families, we also work with many other charitable organisations that can be found on our website, who provide valuable resources and information. We are also members of the RARE Foundation Alliance. You can find us: www.ihaveiih.com I Have IIH Foundation @IHaveIIH Other booklets available in this series Just Diagnosed What is IIH? Living with IIH Carer s Booklet Diagnostic Tests for IIH Surgical Treatments in Severe IIH We are grateful to the Big Lottery Fund for providing the support to enable us to produce these booklets.