How do I join my regional support group?
A list of the groups is available on our website under the Members’ area. Do contact the Regional Support Group Leader (RSGL) who will give you details of the next meeting or, alternatively, check the website for details.
What happens in the groups?
Every group has a different way of operating. Some hold regular meetings and sometimes arrange for speakers to come and give talks. Others are run on a more informal basis, with members meeting for a general chat to exchange stories, ideas and information. Talk to your local leader to find out more about the Zoom Meetings or Face to Face Meetings
How do I get into the zoom meeting?
In the email you have been sent there is a button just click on this to connect to the zoom meeting. The National Zooms are a really important way to see and hear the leading experts and are hosted by the CEO Aneeta Prem. You will have the opportunity to ask questions.
I'm unable to access the forum, what should I do?
Your login may have been unsuccessful for one or more of the following reasons:
• Your password is incorrect
Passwords are case sensitive, so please ensure that your Caps Lock is off
• Your membership has expired
Please ensure that you have renewed your membership. If you believe you have already done so, please contact us via [email protected]
• Your email address is incorrect
Are you using the email address that is currently registered with your TNA membership, i.e. the one we have on our database? If you can’t remember your registered email address, please contact us. [email protected]
If you’ve tried all of the above and still can’t access the forum please email [email protected] and we can send you a direct link to the forum.
How do I get in touch if I am having difficulty talking and need help regarding my tin?
Please email [email protected]
Please note the help email is for TN related questions, not membership queries.
How do I get in touch about my membership?
Please contact the office 0800 999 1899 Option 2 or email [email protected]
Will I need to participate (I'm worried because talking causes me pain)?
We all understand the difficulties that TN can cause. You’re welcome to just come along to listen and learn, there is no pressure to talk or be involved in any other way. However, take a pen and paper with you which you can always use to ask a question. Just let your RSGL know your situation (by phone, email or letter) prior to attending your first meeting.
Can I bring someone with me?
Yes, of course. Partners, friends and carers are all welcome.
I am hoping to start a family and have concerns about my medication - can you give me any advice?
Certain medications, particularly anti-epileptic drugs, can cause birth defects, so we would advise you to talk to a neurologist or other specialist prior to stopping birth control or as soon as you are considering starting a family. Incidentally, members have reported to us that they suffered no TN pain whatsoever whilst pregnant or breastfeeding, however, we do not have enough evidence to state that this is the case for all women. It is important to have some coping strategies and not to panic as fear can induce attacks.
I'm going on holiday soon and am worried about the flight. Is it true that flying can make tn pain worse?
Although there is no medical evidence to support this, several of our members have experienced severe increases in pain during a flight, possibly due to the change in cabin pressure. We would advise you – with the knowledge and support of your GP or specialist – to consider slowly increasing your medication a few days prior to the flight, so that an increase of pain doesn’t spoil your holiday. We have not known of instances where pain has returned during a flight in respect of anyone who has undergone a successful MVD.
I am worried about going to the dentist, can you give me any advice?
Make sure that you tell your dentist about your TN as it is important to continue with routine dental treatment but let the dentist decide what treatment needs to be done. It is wise to have a good local anaesthetic for your treatment. There is quite detailed advice about this within the Members’ area of our website, including what to expect and how to prepare for a dental appointment.
I have been diagnosed with Trigeminal Neuralgia, what should I do now?
Once you have a diagnosis you should ask your GP for a referral to a neurologist who can book you an MRI scan. The MRI scan is used to rule out other underlying problems. It would be useful if the neurologist can request a “thin-cut” or “thin-slice” MRI scan because this can sometimes (but not always) show a blood vessel compressing the trigeminal nerve. These particular scans are only available at certain specialist hospitals.
I have a referral to a specialist, what do I do now?
Knowledge is power and so arming yourself with information about your condition is paramount to understanding and ultimately successfully managing TN. Striking Back and Insights are two very highly recommended books that are available to purchase from our website:
https://www.tna.org.uk/product-category/tna-shop/
The specialist needs to know about the frequency and intensity of attacks, and therefore it is very useful to keep a daily pain diary. Make notes of the time of attacks, how long they last, what you were doing at the time, how you would rate the pain on a scale of 1-10 (10 being the worst pain you could imagine), any medications taken and any medication side effects. This will also be beneficial to you as you can then look for any triggers, plan your day and see how well medications are working. A sample pain dairy is downloadable from the Members’ area of our site.
What should I ask the specialist?
Questions such as: ‘How is it best to control my symptoms?’ ‘What is my backup plan should something fail?’ are good starting points. It is very useful to write down questions that you want to ask, because it’s all too easy to forget during a consultation. It is also a good idea to take someone with you to help you remember what has been said.
Carbamazepine (Tegretol) isn't working and it leaves me feeling really spaced out. What can I do?
The medications used for TN are unlike standard painkillers, in that they don’t work instantly; they need to be taken at regular times so that they slowly build up in the system to a therapeutic level to control the pain. This can take a few days or even weeks. You need to slowly reach the correct dosage for you – under medical supervision – before a significant improvement is noticed. It is very important to increase (and decrease) the dosage slowly.
I have developed a rash whilst taking the medication, what should I do?
If a rash develops you should immediately seek medical advice, as it could be a sign of an allergic reaction and this could be serious and, in some cases, even life-threatening.
Are there other medications available?
Carbamazepine is the “gold standard” treatment for TN. However, there are several other anti- convulsant medications, such as oxcarbazepine (Trileptal), which is a “sister” medication to carbamazepine; some sufferers have experienced fewer side effects on this medication. Other anti- convulsant include gabapentin (Neurontin), lamotrigine (Lamictal) and pregabalin (Lyrica).
Tricyclic anti-depressants, such as amitriptyline and nortripyline, are also used to treat nerve pain. Anaesthetic patches such as lidocaine (Versatis patches) are helpful when placed on trigger points (normally more beneficial for atypical TN than for classic TN). Some people find that medications are most effectively used singularly; others find combinations work best for them. Unfortunately, it is often a case of “trial and error” finding the most suitable medication and dose for you personally, as TN does not respond to medications in the same way for everyone.
However, please note, any changes in dosage levels should ALWAYS be done very slowly and under medical guidance.
My Trigeminal Neuralgia had disappeared but now, six months later, it has reappeared. Is this normal?
Sufferers can experience periods of remission that can last from days to years. Unfortunately, however, the condition can often return.
I've just had an MRI scan and a compression was found. Does this mean I need to have a Surgical procedure?
Not necessarily. There are many sufferers out there who successfully control their symptoms through the use of medications. Surgery is usually considered as an option either once the medications cease to be effective or because the side effects are proving too troublesome.
What is the MVD procedure?
MVD is the abbreviation for Microvascular Decompression. This is a major neurosurgical procedure , referred to as open surgery or non-destructive surgery that can be carried out if there is a blood vessel compressing the trigeminal nerve. It involves the opening of the skull behind the ear in order that the neurosurgeon can lift the offending blood vessel away from the nerve and either pad it with a Teflon- like material, or support it with a sling, which, in the majority of cases, will give the patient several years or possibly a lifetime’s relief from pain.
IS THE MVD PROCEDURE BRAIN SURGERY?+
I’M TOO UNWELL TO HAVE OPEN SURGERY, ARE THERE OTHER OPTIONS AVAILABLE?+
THE PAIN SEEMS TO STEM FROM A TOOTH. SHOULD I HAVE IT EXTRACTED?+
I’M FINDING IT TOO PAINFUL TO EAT. WHAT CAN I DO?+
I’VE HEARD OF A TREATMENT CALLED PAINSHIELD. WILL IT BE OF USE TO ME?+
IS TENS (TRANSCUTANEOUS ELECTRICAL NERVE STIMULATION) LIKELY TO HELP TO RELIEVE TN PAIN? AND ARE THE MACHINES SAFE?+
Is the MVD procedure brain surgery?
No. Whilst two of the three membranes surrounding the brain are opened to gain access to the trigeminal nerve, the nerve and any compressing blood vessel are separate to the cerebellum.
I'm too unwell to have open surgery, are there other options available?
In terms of surgical procedures, there are several options. Mostly carried out at the level of the Gasserian ganglion, i.e., the point just inside the skull where all the branches of the trigeminal nerve meet. The most common of these are:
Glycerol Injections where glycerol is injected through the cheek to deliberately damage the nerve enough to prevent the transmission of unnecessary pain signals.
Balloon Compression which is done in a similar way, but rather than glycerol being injected, a small balloon is inflated to press the nerve against the bone to stop the transmission of pain.
Radiofrequency Lesioning or Thermocoagulation where the nerve is deliberately damaged by radiofrequency (heating the nerve) through the cheek.
Gamma Knife (Stereotactic Radio Surgery) where radiation rays are focused on a specific area of the nerve to damage it sufficiently to prevent the inappropriate firing of pain signals.
We would advise researching thoroughly any and all surgical options before making any decisions. Above all, it is imperative that you receive an accurate diagnosis because, unless the condition is classic trigeminal neuralgia, surgery could well make matters far worse. TNA UK is here to help and support you to reach the decision that you feel is right for you.
The pain seems to stem from a tooth. Should I have it extracted?
Unfortunately, in the case of TN, having teeth out will not stop the pain, as many people have found to their cost. TN is often misdiagnosed as severe toothache or an abscess and it has been known for sufferers to have teeth extracted unnecessarily.
I'm finding it too painful to eat. What can I do?
Many sufferers find it easiest to eat food that doesn’t require chewing, e.g. soups, mashed potato, rice dishes, sauces, paté, mince dishes, pasta dishes, stewed meat or fruit that just melts in the mouth, light fish dishes that flakes into small shreds, scrambled egg, stewed fruit, custard, and rice pudding. Blending food is an excellent option too. Vitamin and mineral enriched drinks, such as Complan, are a good way of ensuring you receive the daily dosage of vitamins. Straws may help. Timing eating when the medicines are working best. E.g. is it easier to eat two hours after meds.
I've heard of a treatment called painshield. Will it be of use to me?
All treatments recommended by TNA UK are endorsed by the Association’s Medical Advisory Board. This is not so in the case of PainShield. We are unable to comment on any treatment that has not undergone randomised control trials (RCTs) because to do so might give TN sufferers false hope. If and when there is any information to say that this, or any other treatment is effective, we will publicise details on our website and in our newsletters.
Is TENS (Transcutaneous electrical nerve stimulation) likely to help relieve the tn pain? And are the machines safe?
The manufacturers of TENS machines consider that it is not practical to carry out clinical trials on the usefulness of TENS for TN, owing to the unpredictable nature and onset of TN. Therefore, there is lack of evidence on which to base any views. There is slight evidence for the possible usefulness of TENS in Post-herpetic Neuralgia (PHN) and it cannot be ruled out that TENS may also help with other conditions. However, our Medical Advisory Board does not recommend the use of TENS machines for people with classical TN, because the lack of clinical trials and evidence to-date mean that the outcomes are unknown.
So far as safety is concerned, the manufacturers’ website carries warnings about using TENS across the front of the head and over the eyes. They have stated that, “there is certainly a risk of optical nerve damage if TENS pads are actually placed on the eyelid and transcranial current can affect the vestibular nerve, inducing nausea and loss of balance.” However, they state that they “are aware that TENS has been used for TN on one side of the face with one electrode placed on the jaw hinge, and one on the chin or cheek”.
As TN is such a difficult and complex condition, TNA UK always places great emphasis on effective clinical trials of medication, surgeries and treatments of any kind. Outcomes need to be predictable with a good degree of accuracy because there is always the danger of making the situation worse, or creating new problems.
TENS machines do not, therefore, meet our criteria. There are specific warnings about placing TENS electrodes on particular parts of the face, as explained above, and the results of placement anywhere on the face are uncertain. For that reason, we would not recommend their use, and the cost of the equipment is a further consideration when no positive results can be guaranteed.
